For the eighth and final episode of Broadcastability Season 1, the PROUD Project team interviewed Kasey Aiello, a Patient Experience Liaison with Alberta Health Services. This episode discusses the importance of peer support, the benefits of flexibility at work, and the impact of funding programs.
Pour le huitième épisode de la première saison de Broadcastability, l'équipe du Projet PROUD discute avec Kasey Aiello, une intermédiaire pour l’expérience du patient chez le service de santé de l’Alberta. Cet épisode aborde, entre autres, l’importance des pairs, les avantages de la flexibilité au travail et l’impact des programmes de financement.
Recording: Ahad Alingary
Editing: Ahad Alingary and Isabelle Avakumovic-Pointon
Cover Art: Isabelle Avakumovic-Pointon
Transcript: Isabelle Avakumovic-Pointon
Music: Justin Laurie
*Read the accessible transcript HERE
Kasey: [00:00:01] I'm always wanting to better myself or help other people better their lives. But I've always had that little internal motivation. I've had my fair share of downs as well. But just being able to pull myself up and just set some different goals for myself, it's something I try and I guess spark in other people too. It's just that we're still alive. We can still do really incredible things.
Andrea: [00:00:27] Welcome to Broadcast Ability Podcast Buying for and about workers with disabilities and inclusive workplaces. It's part of the Proud Project at the University of Toronto. You can find out more about the Proud Project on our website, The Proud Project.
Chloë: [00:00:46] This podcast was recorded and produced on the traditional ancestral territories of the Huron Wind and the Seneca and the Mississauga's of the Credit River. We would also like to acknowledge the other indigenous lands across Turtle Island where we conduct our research and record this podcast. Miigwech.
Chloë: Hi, I'm Chloe Atkins and I'm a political scientist at the University of Toronto, and I'm the lead investigator of the project. I'm a bit of an oddball because I do work in medicine and disability, and Andrea Whiteley and I have worked together for a number of years.
Andrea: [00:01:20] Hi, I'm Andrea Whiteley and I am the postdoctoral research fellow for the Proud Project. I have a PhD in communications and I had the idea to create these podcasts as an innovative and compelling way to communicate our research to the public by allowing our research participants to tell their stories.
Andrea: Welcome to Broadcastability. In our eighth episode we meet Kasey Aiello. Kasey’s podcast is the first time I've been able to meet a participant face to face because we live in the same city.
Chloë: [00:01:54] So yeah, that's true. Yeah. You did get to meet her. Yeah, that's cool.
Andrea: [00:01:57] I really appreciate her stories about her job with Alberta Health Services, where she's a peer mentor to people with recently experienced a spinal cord injury.
Chloë: [00:02:08] One of the things I really like about this, I actually do on the side work around health equity and there's a lot of push across the board around patient centered care. And here she is in a permanent position that has evolved that she, through her own performance, has sort of created and sustained around patient sort of driving or influencing other patients and their care and their sort of perspective moving forward. And I love that.
Andrea: [00:02:31] Yeah, it's really interesting. She is also is one of our research participants that really benefited from being a part of a disability community. She participates in a lot of different sports and she credits the community members with helping her to learn a lot about what it's like to live well with disability.
Chloë: [00:02:52] Yeah, I think that you've been focusing a lot on mentorship in the study and I think it's really important and the fact that she has been mentored by other people and then she goes and mentors others creates a dynamic energy and reciprocity. I also think that she's got a great community of people around her, her husband and her friends. She's been able to also successfully garner social resources, and I think that's been important in order for her to succeed in her job and in her life. And she obviously has a great life. It's a wonderful interview.
Andrea: [00:03:23] Yes. I think we learn some new things from her that we haven't heard from others.
Kasey: [00:03:35] So I currently work for AHS here in Calgary and my official title is a patient liaison for the Department of Clinical Neurosciences, and it's specifically at the Foothills Medical Center. It is actually a very unique position in that I'm the only one in our province with that title. My educational background doesn't really bring a ton to my my job per se, but my 22 years of lived experience is very valued, and I notice that more and more all the time. So the main one of my main roles at Foothills is actually to support a group of other peers with lived experience who are volunteering their time to come up to the rehab floor and just kind of connect with the patients up there. I like to say plants and Seeds of Hope. We do a lot of listening and it's a non-clinical. There's no case management in this role. So it's really neat to kind of connect with patients on a real level. I share the good, the bad and the ugly, and I always tell them, I look forward to seeing you on the other side. But the reality of it is I meet people at some of some of the crappiest times of their lives. And yeah, so it's … it's a bit of an emotional position at times, but I'm very thankful to be where I am with my job. And in addition to supporting all of my wonderful peers or my army, as I call them, I really just am involved or part of the different program meetings or programs for brain injury, stroke and spinal cord injury. And then, in a larger sense, taking part in a number of initiatives or programs. Cool things happening within the world of spine within Alberta.
Andrea: [00:05:48] That's great that you can be a liaison or a mediator like that for your community. I think peer mentoring programs are really effective, especially in terms of supporting the mental health of program participants. So. Kasey, I'm also wondering if you've had any mentors in your life.
Kasey: [00:06:05] Early on in my injury. You know, when I was still in the hospital, I did have a few other people in the spinal cord injury community. One woman in particular. She was a quad about the same level of injury as myself. She was just even back then in 2000, she was pretty mind blowing what she could actually do with just the use of her thumbs: pushing around in her manual chair, driving a Jeep Cherokee. I really couldn't even wrap my head around how she hopped up in this Jeep threw, threw her chair in as well, and just played basketball and lived a very independent life. So after having a few visits with her, I think that that was like, wow, okay. So I might not be able to do that stuff right now, but she can do that. Maybe I can. Maybe I can do some cool stuff like that later on. In addition to her. I was actually in rehab at the same time as a gentleman who had acquired a spinal cord injury a number of years back, but actually was in rehab for falling and bumping his head. So he had acquired a brain injury, but he was a quad. And so I didn't know him as just a quad without a brain injury. So we became friends in rehab and he lived on his own.
Kasey: [00:07:35] Loved to travel. It was just like one of the weirdest, most interesting, eclectic dudes I've ever met. And we continued our friendship after leaving rehab. And I think in a big way he provided a bit of mentorship in in so many ways. But. I also had to do a lot of learning by so many failures, so much trial and error on my own. We didn't I didn't have access to the Internet like we do nowadays to chat rooms to other folks with spinal cord injuries, let alone women. The number of women that acquire spinal cord injury is quite low compared to men and then also quads. Yeah, it was it was really rare for me to to meet other people, but. I think my injury just really helped me tap into what I was most passionate about. And one of those things was food. So I could only rely on people for so long to kind of cook me what I wanted until I was just like. Let's just get in there and like, it's going to be messy and it might not turn out right. But if I don't get in there and try it, it's never going to get easier, right? Really not knowing kind of exactly what I wanted to do.
Kasey: [00:09:03] I did, I was very interested in becoming a dietitian, but the thought of moving really, really far away from home, I don't think I was ready for that. Just being so new with my injury still requiring a little bit of help. So I didn't pursue university to become a dietitian. And moved up to Calgary. Like I said, I did a little bit more upgrading and then. Just kind of wanted to find a job to be able to save some money to travel. I was very interested in traveling. I was at the age when a lot of my friends were going off and traveling all around and it kind of looked different for me. But I was eager to just like try and do a couple of fun trips on my own. Safe ones. Eventually, I ended up working with a company called Spinal Cord Injury Alberta in Calgary, and I had applied for a grant to take a program, a certificate program here at SAIT. It was called Nutrition for Healthy Lifestyles, but it was basically being a nutritionist. So still in the area of health. Closer to home. And the reason I got the grant, actually, or my motivation in trying to apply for the grant was really to just bring that information back into my spinal cord injury community because there isn't a ton of information on our dietary needs after having a spinal cord injury.
Kasey: [00:10:34] And I really noticed that when I was involved in adaptive sport and just in general, they still wanted us to sort of adhere to the regular Canada Food Guide, but I knew there was something that was a bit different. I sort of had a combination of positions when I was at Spinal Cord Injury Alberta. I was a hospital liaison. So as an outside provider going up to the rehab unit, visiting with those newly injured patients and just kind of letting them know about the services and just some of the stuff that we could help them with when they're on the outside. And sort of one day a week or I think it was once a month, my manager encouraged me or told me to, but he was open to the idea of me actually having like a cooking class with some of the clients. And since I'm a quad, I've really had to learn how to adapt in the kitchen. So I thought that showing other people you know some cool gadgets or knives or tips or tricks that I use with my hands could be really helpful. And also, just again, expose some really easy, healthy meal options for other folks in shares as well.
Chloë: [00:11:54] It speaks to the type of flexibility and resilience that develops in people who live with disabilities or a willingness to learn from failure and to have another go at something. In fact, I think this is one often one of their greatest assets.
Kasey: [00:12:06] Yeah. Chloë And if I could just touch on what you said there, my disability has actually forced me to be a little bit more creative and just really everyday things that I do. And I think that's a huge advantage that myself and other people with physical limitations, it's like we know what we want to do, how are we going to do this? So that was a huge thing. That was a plus on my side is just I'm already a creative person, but it really forced me to be even more creative.
Chloë: [00:12:42] I remember you commenting that there was a coworker like who who makes a big difference or has made a big difference in your career, in your work right now or in a job previously. And that, I think is really important. Those relationships with coworkers or you talk about that a bit.
Kasey: [00:12:58] My office mate that I shared an office with before COVID, she was just such a breath of fresh air. You know, I had known her previously for a number of years, just on a professional level, like coming in as a service provider, working with patients. And she was an OT [occupational therapist]. So she, you know, have always have kind of questions about what do you think about this? Or I even would ask her because I knew she was an OT and she kind of thought differently as well. But to just work side by side with her. She's a super organized person, so a bit of mentorship that way, but also just the ability to connect with someone on such a real level. Even though it was a work buddy, it was like, wow, this work is my job is provided me with so much more than just a steady job and income and purpose, but also this really cool friend that I think I'll probably have for a very long time. And, you know, I could, I could confide in her. And I did many times. And. She had mentioned, along with a lot of other people, but it just kind of stuck. You know, you should try meditation and see what that's like. And I was kind of at a very low point in my mental health and I was just like, Why not? You know? So I always thank her for providing some initial guided meditations for me to kind of just start my journey down that path.
Andrea: [00:14:34] So we talk about sort of thriving in the workplace and how a person with a disability could do that. And you seem to be such a great example of that. But yet and you're teaching other people as well, you're you're teaching from your experience. But I'm curious what you said at the beginning, that you have the only position that you know of like this, a paid position, a government, I guess it's funded by the AHS. Talk about that a little bit. Like, is there do you feel like there should be more people like you working in these mentorship positions? Just, um, and how could that how could that happen? How could how could we make that happen?
Kasey: [00:15:13] Yeah. So my position is unique, but I'm confident that the word is getting out or has gotten out how valuable it is to the team, various teams in so many ways. People are saying, huh, we could really use one of those in our program, right? And even up in Edmonton to have a position like mine be able to help out with education. Up at the Glenrose [Hospital] for rehab, for neuro rehab, they're really seeing how valuable that would be. So I think they've they're trying to see how they can work that into their budget. But the first three years of my position was actually uniquely funded by a law firm, a personal injury law firm, which is weird. But they had an agreement with the Calgary Health Foundation to fund my position for three years in hopes of Alberta Health Services taking it over after that three years and thankfully adjusted. And as of this year, as of fall 2021, my position was made permanent. So I'm now, it's no longer funded by a law firm, but that's how the position started. It was actually funded by a law firm.
Andrea: [00:16:31] Yeah. I was just thinking about your employers, various employers you've had and the sort of support that they've provided for you. What kind of if you needed accommodations, how has that worked out for you?
Kasey: [00:16:50] I would say really, really well. The first job that I did get after. You know, I had after having my spinal cord injury, was sort of like a tokenistic job, but I thought I got to take it to get my foot in the door. It was actually a greeter at IKEA when they open up anyone here in Calgary and I had a really great interview. I kind of blew them away, but they just really didn't know what to do with me. And I had heard about Walmart greeters and I was just like not really keen on the idea. But you know what? It was a way to get my foot in the door. And I ended up meeting so many really cool people and I actually wasn't in that position for too long until we actually found a different position. So they were I think they were just really open to the person that I was and knowing that. Even though they didn't have a position for me at that time, they could really see me be part of that culture, that community. And they did even ask, “How are the washrooms?” They were like really kind of go around and tell us what you think as far as like navigation wise.
Kasey: [00:18:04] And so they'd reach out to me every once in a while for things like that. I really like that. Like. I was still so new to it. I was just really still adapting to my surroundings. And I didn't have that. Perspective like this should be this way because of this, this and this. I'm, I'm fairly soft spoken. Uum, I don't advocate for myself as much as I guess some other people do when it comes to our rights to be able to access certain things. I really try and adapt to my surroundings the best that I can. But they were very accommodating. Even with my transportation getting to and from work, it was not the most reliable. So I just let them know, you know, I'm I've asked my bus to be here for this time. May have been late, but I always had a really good communication, line of communication with my manager. And then another job that I had was working for a career center for people with disabilities. So they are quite understanding.
Andrea: [00:19:09] So how, how did you, A. how was that transition to working from home? And B., are you working again at your workplace? Have you gone back? And how was that for you?
Kasey: [00:19:24] Once we started, once COVID hit and we were asked to work from home, there was a bit of a transition in. Some things were a little bit harder, but also a little bit easier in ways. We're able to have Zoom meetings and still stay connected that way. It made my days a lot easier because I didn't have to wake up at 5:00 in the morning to do my bowel routine, have my shower, throw on my mom hat for a little bit, and then get my son off to school and head into work. My manager's always been quite flexible. He was always like, you prioritize your health first and your health first, then your family and then your job. Like he just got it. So as long as I put in my 8 hours at the time, he was happy, you know, and I was very grateful for that because he understood, you know. What I go through in the morning just to be able to get up and be at my job. So being able to sleep until 6:00. Wow. Sleeping until six. You know, I can, you know, not have to have gotten completely dressed before I attend my first meeting. That was really awesome too. And then it kind of helped me balance my family responsibilities at home.
Kasey: [00:20:49] I could throw a load of laundry in during the day or not have to worry about making my lunch in the morning. I can easily make a sandwich at home during my lunch break. Drink as much water as I want because I can go to the bathroom as much as I want. Take a stretch mid-day, which has been amazing to be able to hop out of my chair because my back kills me by the end of the day. So just hop out of the chair and do some stretches for 20 minutes and then get back to work. That's been awesome. And I think. Just realizing that the full eight hour a day thing wasn't really helping me maintain good health. Having that conversation with my manager. And really saying, you know what? I'm pretty sure that a six hour day is a lot more sustainable to me, being healthy and doing the best that I can with my job at my job, because 8 hours a day, even though it's two more hours a day, I was absolutely spent. I was giving everything to my job and really didn't have a lot left in the tank for me or my family at the end of the day.
Andrea: [00:21:55] That's why we're doing these podcasts, because people don't realize that unless they have someone in their lives who is experiencing working with a disability, those extra burdens like I would have no idea that sitting for 6 hours was almost excruciating by the end of the day or sitting for 8 hours.
Chloë: [00:22:15] How did you know? When you're quite young, when you're first injured, it's when you know. To be honest, most people are moving away from home, moving from childhood into adulthood, part time jobs into full time jobs, building their adult life. And to have an injury at that moment is quite marked. And so how did you know that you were going to work? Because a lot of people just sort of might think it's not I'm a quad that that's not… How did you know that you were going to work? What was it?
Kasey: [00:22:48] I knew that living on a AISH which is here in Alberta, it's an acronym that stands for Assured Income for Severely Handicapped. It was enough money to live on to keep me sort of off the streets and feed me, take care of my basic needs. But I really… I wanted to travel. I wanted to have things like a computer, my own computer, or live on my own. So. It is weird to think. I tried not to compare myself at that time to some of my friends because yeah, they were off. Some of my friends were buying houses, off traveling and here I was just trying to get to a part time job and not have an accident while I was there, you know, sort of living in two worlds. Yeah, it was, it was weird, but I think I was just motivated. I've always wanted to better myself in in various ways.
Andrea: [00:23:50] I like your story. I think it was from our first interview when you were talking about some funding you got that you had to apply for, and it was to put a motor on the back of your wheelchair because you were at work. And that was just this one spot where you couldn't it was a little bit more difficult to navigate up a ramp. Can you tell us about that story? Because I was it was something I really thought about that again, I had never not have I have never been in a wheelchair. And I wouldn't have thought of, I wouldn't have understood unless I heard your story.
Kasey: [00:24:26] Yeah. So my job here at the hospital, when I first started, there's a lot of wheeling around the hospital and it's a very large area. And I mean, it was great for fitness, but there were some, some areas of the hospital in particular going from the main hospital back to my office.
Chloë: [00:24:45] The tunnel, the tunnel. I’ve done that.
Kasey: [00:24:47] The tunnel. I have to go through the parkade up into the underground door to my office and going down, it is fun. But going up it it's kind of it was a bit sketchy. The slope was a little bit steep and, you know, in the wintertime. It's very cold down there because it's not heated. It's in the underground or a parkade. But there were just some elements of it just being kind of sketchy that I thought, Hmm, I wonder if I would be able to sort of apply just to have a bit of a, an electric assist on the back of my chair now to decrease my, I guess really just trying to prevent any shoulder injuries. There's a fine line of pushing around in a wheelchair for exercise and health. And then there's the overuse. So I applied through an Alberta, a Government of Alberta grant called DRES. Again, it's another acronym. It stands for Disability Related Employment Supports. And so what it is, it helps supply some funding for folks who, they’re in school or working, with some accommodations. So it's called a Smart Drive. I put it on the back of my chair and I have a watch that I kind of turn it on and turn it off when I need it. And yeah, the government helped pay for it. I think it was like $9,000, which is ridiculous. But that was really huge. And I always tell people about this grant now because it's pretty incredible. Back when I worked at SC Alberta, they also helped me put in a lift in my van. Because I was visiting clients. So anything that kind of helps support you with your job or your education, they will help fund to some capacity.
Chloë: [00:26:49] But let's talk about the finances for people with disabilities, because when I was young and I think most people think that, you know, we have health care, universal health care, everybody gets what they need. But when you end up with a condition, whatever it is, that requires equipment. In other words, you're in it for a much longer term than a few weeks, suddenly that you're not covered. So can you tell me about that? Can you just sort of share that navigation? Because what I'm really clear with is that you got those things through DRES, which was employment related. You would not have been able to get a lift if you just needed it because you needed it to be able to leave your house. Right.
Kasey: [00:27:25] Yeah. You know, depending on how you're injured, you know, it's it all comes down to funding and there are multiple avenues for funding. Since I was a sports injury, I really didn't have any funding. You know, I didn't have private insurance when I was 20. I was working as a waitress at a Japanese restaurant, so there was no insurance there. But the government does have a program. Again, it's an acronym. It's AADL, it stands for Alberta AIDS to Daily Living. And you work with therapists who assess your needs for certain types of equipment, whether it's bathroom safety equipment, wheelchairs and so forth. And the government will fund a certain portion of that. You know that they're not going to fund the really good stuff. They'll find what they need to, to help people get by. So yeah, off the start I was able to get my wheelchair partially funded by the government. And then a ramp. Sorry, a lift getting into my house. There was a fundraiser for me and it wasn't a Go Fund Me like we have nowadays. It was just a regular old fundraiser. I really had to tap into my community back in Lethbridge for some help with renovations, even to just buy a regular bed for myself and my chair. Yeah. Sports injuries are tough.
Chloë: [00:29:08] Well, I mean, if you get injured, any uninsured injury is tough, basically. In other words, if you're not injured in a car accident or you're not injured in the workplace, then you're you're in trouble. But. Tell me a little bit about, so if you didn't have your assist, if you didn't have hadn't fundraised for your lift to get in and out of the house and the renovations, could you work, do you think? Could you if you didn't have those equipment?
Kasey: [00:29:36] Yeah. No, that would, that would be quite difficult. Just having to rely on people to help me in and out of my house. Yeah, it would be very, very difficult unless you sort of maybe had a you know, and it's hard to compare now to back in 2000 like things were just so different with technology. I think that's I really considered where could I work? And I couldn't really see where I could. So that's why I went to school. But again, it was … I relied on special transportation or even buses with lifts and the lift to get in and out of my house. So I think it would have been pretty hard without the technology.
Chloë: [00:30:18] What do you do when you when you apply for a job? Do you disclose in your letter?
Kasey: [00:30:23] Yeah, I think I get butterflies thinking back on the jobs that I did apply for and that do I have to disclose I'm in a wheelchair or. Or not. And I think. For me it was. I want to see how far I can get in the interview process before I have to. Right? I don't want that to be an immediate flag for them to be like second guessing. Well. This girl seems really great, but, you know, it might be a bit extra work. A bit of extra work. So. You know, to my recollection, it was kind of like until they wanted to meet me in person and do those in person interviews, then I ask those questions. Just curious if there are any steps into your building? Or … mostly was just like steps. I would prepare to go to the bathroom before I went, so I didn't really have to ask if there was a bathroom. But the whole stairs and I use a manual wheelchair. But it even makes me anxious thinking about it.
Chloë: [00:31:27] You mentioned before that you did, I think you tried to be an entrepreneur at one point that when you got that grant through that sort of self-creating a job, that you've had periods of unemployment, what was that like and how did you how did you cope with that? What was that experience like and what got you out of it? Yeah.
Kasey: [00:31:47] So my job when I was working with Alberta, there were funding cuts. It's a non-profit. So when sort of was back in 2000 and 17 or 16 when the economy kind of took a turn for the worse. You know, I thought, oh, I'm not in oil and gas. I'm pretty immune to this whole thing. But oil and gas contributes a ton of money to non-profits. And that my employer was a nonprofit, so they did have to cut some positions. So mine was cut. But I had this opportunity and this idea with a friend of mine at the time. To really start up a small company to fulfill a gap that we saw in the community that nobody was really doing anything about. And that was just providing wheelchair repairs outside of business hours. My buddy, he's in a chair and he was super handy with his hands, very creative. And we paired up with another lady who had ideas about funding for us. So we kind of created a small business and then ended up partnering with a larger business to kind of get our foot in the door. Um, I guess into the medical equipment world, you know, us being in chairs, we thought, “We can really help provide people with proper stuff like proper fitting wheelchairs and service when they actually need it.” But it was a totally different world being in the world of medical equipment. It's very male dominated and it was … I really wanted to help my community. But at the end. At the end of the day. I love the skills I learned from entrepreneurship, but it almost broke me. Like the emotional weight. I gave so much more of myself to my job at that time and to my business partner.
Chloë: [00:34:00] So do you think that difficulty was related to you mentioned being a woman, and I certainly know that, like I've had my experience of the medical tech world and it is run by men, largely serviced by women, a lot like OTs, who work at their beck and call. But it is a male environment. Do you think that's mainly it or did you have issues around access as a person? I mean, do you think the fact that you were disabled had any impact or was it more of that? It was just the wrong thing for the wrong mix at that moment.
Kasey: [00:34:32] Yeah. You know, my business partner at the time, he was the more hands on, hands on person, whereas I was the more like behind the scenes kind of getting things organized and organized. I don't want to say admin, but there's a lot of admin to do and making phone calls. People always thought I was his help, right? And they would never see us as equal partners. I could make a phone call, try and get something done. It wasn't done. He could pick up the phone call and it would be done. It was so frustrating. So it had me second guessing myself a ton. And and you have people a lot of men in the industry just weren't ready to to see me as someone who had the knowledge, even though I didn't have that physical ability.
Andrea: [00:35:22] I really like what you said at the beginning when you were talking about this was something I wanted to do for my community because he saw a need for it. And so, you know, that's that's why we love entrepreneurs, because they see a need and they fill it and they look for solution. So let's talk a little bit about your community. I especially, this is changing the subject a little bit, but I'm really interested, and I see in a lot of our interviews people who are involved in something extracurricular. So whether it be sports or something outside of of work and family and whatever other, something for pleasure. How has sport played a role in your life and in helping you be the person you are today?
Kasey: [00:36:05] Sports have played such a huge part of my life. Even before I was injured and post injury, I had a really hard time figuring out who I was after I was injured without having sport in my life. I was like, Who am I if I'm not mountain biking or snowboarding or just that very physical part of myself? Even from a really young age, I used to like swim competitively. I think I tried pretty much every sport out there, but I was a natural born athlete. So after having my injury, the first thing I tried was adaptive skiing. I hopped hopped in a sit ski or a bi-ski, and that just opened my eyes right back up. Like there was that excitement still alive in me and that part of me that was like, Yes, this is still possible. Even though it looks nothing like it did before, it's still entirely possible. And there are people out there who want to help me have these cool experiences. That was another reason I actually moved to Calgary because there were more sporting opportunities as well. I tried wheelchair racing for a little bit. I tried hand cycling. I tried wheelchair basketball for a number of years and had tried wheelchair rugby a little bit. But ultimately playing, especially playing like a team sport for me was more than just the actual sport of it. It helped me improve my endurance, my confidence, and overall my quality of life. You know, it wasn't until I started playing basketball that I saw other people driving their vehicles to practice, hauling their chair and their sports chair in and out of their vehicle to the gym, practicing and then carrying on, having jobs, families. And it was like.
Kasey: [00:38:09] Wow. Wow. That's really cool. And especially traveling with the team, you know, I'm going to need a wheelchair accessible room and they're like, “No you don't. You just sit on the toilet, hop down in the tub, have a shower, hop out.” And it's like. I never thought about these things. And they're very, very simple things that that helped me realize, wow, I can really travel now if I don't have to lug around all of this extra equipment just to help me go to the bathroom or have a shower. So, I really think all of my teammates, and I guess I'm just competitive, just being involved in that adaptive sporting community. But my, my current love loves are wheelchair rugby, which is a great way of releasing stress and frustration from just the everyday and even just being a mom or a wife or whatever, you know, being out there, pushing around, smashing into other people in chairs, it's just fun. Community is incredible, and even though it's male dominated, they're very supportive of anybody being involved. And I'm just really trying to recruit anybody, male or female, into the sport because it's so much fun. It's kind of like my antidepressant. I'm very sad when I don't play. I'm very grateful to be able to go away for some weekends, to tournaments, to just be me like Kasey again, without having to be like mom and wife Kasey. But just Kasey. And I'm actually heading off to Squamish next week for the first adaptive mountain bike camp in Canada. It's all girls, so I'm really excited about that. But yeah, it just, it that's fuels my spirit just to be involved in sport.
Chloë: [00:40:10] One of the things I was thinking about is you're telling me this is, is how much probably what's happening in that industry will get carried over into the able bodied world, like those innovations that you're seeing to create this badass mountain bike will inevitably make somebody else's life easier. I think my prime example is years ago when I had really poor hand function, I had to use Dragon Dictate and that was terribly expensive. I got it through a government program like seven or $8,000. It was a big deal. And and now it's just it's commonplace on computers to do this. And so as you're talking, I'm thinking people are like, oh, well, it's just sports, but I'm just thinking there's such a basis for the way, in a sense, the creative needs or the adaptability of people with disabilities and the desire to engage with the world becomes a basis for things that are taken up into the mainstream. I don't know whether you've ever thought about that or not.
Kasey: [00:41:11] Yeah. It's it's funny to just work so hard to be able to do really simple things, but even … we're all getting older. Or if we have the privilege to get older, we get older, and our bodies require different things to kind of do what we love to do. And I've had so many people approach me on my bike or in my wheelchair with the electric add on piece that are like, Wow, that is so cool. I love that. Or, you know. They're like, I want one of those. And they're like, My response is, you would until you find out the price of them, right? Like they just. I joke my husband has a really nice, expensive mountain bike, but he may get a new one every few years. But I think I have my mountain bike for life and it's because it's so expensive, but hopefully in the future. You know, the need for these things not becomes higher. You never want to see more people need things like this, but that it just made people bring down the price point or make it more affordable for people, or that there might be more grants available for people because they see that these things are expensive and the value it brings to people’s lives is incredible.
Chloë: [00:42:29] It seems to me there's a paradox for someone living with a disability that they need or can need, often highly expensive, inappropriately expensive, I think, adaptive equipment in order to interact with the world and and probably to work. And that is often combined with a lack of financial capacity. Disability pensions are very meager. And so I'm just wondering in your situation Kasey, how did being married help or not help your situation in this context?
Kasey: [00:42:58] Having been in a relationship. You know, there's that fine line of wanting to still have your independence. Whether it's financially, personally, just to be able to do everything. But I think at the same time. And I've asked him, like, “Weren't you afraid of … or didn’t, you know, did you think you'd have to help me with the bathroom or these kind of things?” And he just said, “You kind of look like you had it under control, you know?” So I was like, “Whatever.” But you know, for a long time when my husband and I were just dating, I was on AISH. And so I had my own money to be able to contribute a portion to the bills, but also have some money for myself and, you know, I had medical benefits from being on AISH. And when we got married, we knew that that would all be taken away because it takes into account your partner's income. I had only really ever been working at the time before we were married, I'd been working, just a part time job, and I knew that my part time income, once we got married and not having my AISH to kind of supplement. It was scary to think about how much less I could be contributing to our family. And, but I knew that. It was a stepping stone for me.
Kasey: [00:44:35] It helped me, like I said, from being homeless. It helped me secure all my basic needs and live a healthy life. That was my choice to be healthy and live off that amount of money. But I knew I wanted more, and I knew it would be a struggle. And it was, you know, for the time when I was unemployed. I wanted to be contributing more to my family, but I just really, I couldn't find a job. And that's why I, I pursued sort of self-employment to try and see if I could pull in a bit more money to contribute to the family. But yeah, it. You know, it's nice to be able to rely or have a little bit more stability with my husband's income. But you never want to think about that, right? Like I've always been very independent and wanted to kind of. Support myself. I just had to wrap around my wrap my head around the fact that. No matter how much income we bring into our family, it's our income. And I will probably never make as much money as he ever makes. But I'm not going to hold that against me as a human being. But it's a bit of a mental struggle trying to think about it like that sometimes.
Chloë: [00:45:55] So what do you think about the systems of finance that support people with disabilities in the country? And do you think there's a better model like or do you think it works?
Kasey: [00:46:04] Yeah. That's a tough one because. You hear them and you see some people. Get on AISH. I don't want to say seamlessly or it appears as though they were able to get on it quite easily. And. You never want to want to judge. But then there's someone who you. The need is more obvious, and it is a bit more of a struggle for that person to get that basic money to live, right? I don't even know the application process or really how they define who's eligible for that nowadays. It's… I really try and help people understand that like. The first few years are tough in so many ways, right in front of some of those people that have that funding that allows them to just. Live a stable life. I really try and express how grateful I wish I would have had that. How grateful I would have been had I had that. If I was injured. WCB. It's kind of like the golden ticket of being injured. You need this. All right. When do you want that? Or, you know, or. I had to. Really? Fight for and seek out ways of getting the things that not only that I needed, that I really, really wanted. So I share my stories and my struggles. A lot of people look at me and they think, wow, you just you have an easy life. You've got so many things. And but I've worked my butt off to have what I have and to have done what I've done.
Kasey: [00:47:48] I think it's easy for people to just brush it off and see me as me now. So I share those stories and I tell people about different grants or different funding options. I don't think I'll ever settle. Ever. I just I'm always wanting to better myself or help other people better their lives. But I've always had that little internal motivation. I've had my fair share of downs as well, but just being able to pull myself up and just set some different goals for myself. It's something I try and spark in other people, too. It's just that we're still alive. We can still do really incredible things. Yeah. We can still do really incredible things. You know, I think we talk a lot about mental health and even more so these days and trying to normalize it. But it's a, it's a lonely journey trying to work on your mental health and just feeling whole as a person. I think we can do way more as a society that would help bring us together to make us all feel like we're all human, even though we some people may make more money or have more abilities, we're all human at the end of the day. And, you know, I've I've had conversations with my husband, I guess, because I've become aware of how much more I thrive when I'm just, when I'm in a more stable position and I'm not in survival mode, how much more I can contribute to my community, to my family, in healthy ways.
Kasey: [00:49:33] Right. I think we. You know, I believe like universal health care, universal basic income would be would be great. But there are always going to be people that will misuse or abuse it, but you can't really focus on that. It happens within the system, within Alberta. So people just get used to it and they're happy with just living with that amount and never want to do more for themselves. So there's that fine line of. How can you, you can't start fires underneath the people's butts to help them set goals to better themselves, better their community. If they, if they really don't know what that looks or feels like. I've had some really great interactions and experiences with other people with disabilities in my community that have done really great things. My buddy who makes the Adaptive Mountain Bikes, that's a project he worked on for 20 years. But it's... it's really just, helping spark that fire in people's soul again to live life, even if it is differently, and to look like a good. I'm not a religious person, but, like, be good to yourself and be good to other people and. And yeah, we're not here forever, so we kind of just have to do the best with what we've got and and go from there. That's what's helped me be a better me and I hope other people can see that or learn from that.
Andrea: [00:51:18] You've almost anticipated usually what is our closing question. But if you have any other thoughts. So the question is, if you were to be able to advise your younger self or a young a younger person trying to make it in the world and just starting out in their careers, what would you tell them?
Kasey: [00:51:43] One of my Instagram posts, I think it was last year, it was like a letter to my younger self. And I said something like. You know, just. It's so much easier for us to be hard on ourselves. And that may work for a long time and help you get to the places where you need to get to. But don't forget to be kind to yourself. Right? It's a foreign feeling sometimes because we are so used to being hard on ourselves, but be be really kind to yourself and know that you're going to be okay, even though you might not feel okay today. The highs are high and the lows are low. But just don't give up. Because, like. There are some pretty incredible things if you work hard and have even if they're silly goals, no super silly lofty goals, you may, or I have accomplished some pretty amazing things. And I tell people. I have a pretty extraordinary life. I think my chair life has actually been better than my previous “up and walking around” life. But it's because I've. I've sought out opportunities. I've traveled, you know, just tried to be as human as I can.
Chloë: [00:53:19] Thank you for listening. We hope you've enjoyed Broadcastability. You can find us on the web at the proudproject.ca and broadcastability.ca. You can also find us on social media at the Proud Project on LinkedIn, Facebook and YouTube, and we're “theproudprojectca” on Instagram.
Andrea: [00:53:43] Broadcastability is produced by the Proud Project at Scarborough College at the University of Toronto and by Easter Seals Canada. The music in this podcast was composed and produced by Justin Lawrie. Isabelle Avakumovic-Pointon created Broadcastability’s cover art. Ahad Alingary and Isabelle Avakumovic-Pointon edited this episode. We would like to acknowledge the University of Toronto, Scarborough and our podcast partner, Easter Seals Canada, for supporting the production of these podcasts. We would also like to thank our funding partners, the Canada Social Sciences and Humanities Research Council, the Centre for Global Disability Studies, TechNation and the Catherine and Frederick Eaton Charitable Foundation for helping us create Broadcastability.