Episode 23: Disability Culture & Accessibility with Michael Garafola and Carolanne Link

Dr.  Wendy Slusser  00:03

The Semel Healthy Campus Initiative Eudaimonia Award is an annual recognition award given to members of the UCLA community who exemplify living a life of meaning and purpose. Project manager for UCLA’s Disabilities and Computing Program, Carolanne Link, and adaptive program coordinator for UCLA recreation, Michael Garafola, work every day to make UCLA a more accessible and empathetic campus. Join me as I chat with Carolanne and Michael and learn about their life stories that brought them together under the Eudaimonia umbrella. Carolanne and Michael, what a treat to talk to both of you today on our LiveWell podcasts. And it’s really a unique opportunity for us to be able to interview a Eudaimonia awardee, and that person who nominated the Eudaimonia awardee, the nominee, and maybe we’ll let everyone in the listener world try to guess who was nominated and who nominated the other. But before we get to that, I want to just give all our listeners a little bit of background of what eudaimonia means, right? Something I didn’t know about until we started this a couple years ago, honoring people who live a life of rich meaning and purpose. And it was Aristotle who distinguished between hedonia, which is the brief fleeting happiness derived from immediate satisfaction, I think most of us know that word. But many of us might not know the word eudaimonia, which is the sustained happiness that comes from living a life rich in purpose and meaning. And every year, our MindWell pod, led by our wonderful Dr. Bob Bilder, who is a neuroscientist and studies creativity in the brain, and Dr. Nicole Green, who is a PhD psychologist who leads our CAPS, which is our group that addresses the emotional wellness of our students on campus, and now working remotely. And one of our interviewees today is a Eudaimonia awardee, and one nominated that person, so maybe I’ll let each of you, Carolanne and Michael, just say a little bit about yourself and maybe everyone in the audience can guess maybe who was nominated.

 

Carolanne Link  02:37

Oh, I’m not even sure where to begin. But my name is Carolanne Link. I am the DCP’s slash UWAI project manager that stands for the UCLA Web Accessibility Initiative and the Disabilities and Computing Program. And what I do is help manage the program that ensures that UCLA’s web content is accessible to those with different disabilities. So the largest group of that is those with visual impairment and blindness, but also we consider those who have many different disabilities that could include epilepsy, or dyslexia, or amputation. And so I love what I do, because I always feel like no matter what the battle is every day, we’re always making some little change. I always see a step forward every day, I met Michael, at the UCLA Committee on Disability meeting a few years back now, while I was a student at UCLA, and then I am now the subcommittee lead for the physical spaces subcommittee for UCOD, and I love the projects we’re working on there. Since we’re not on campus right now, we’re conceptually mapping the campus space to figure out accessible routes, to figure out accessible bathrooms, all this sort of resource and route inventory, which we’re looking to do not just to improve our campus currently, but also as a proactive measure for LA 2028 when we host Paralympics, so also a really cool thing to be involved with. So I love being involved with both the physical spaces, but also the digital spaces. It’s just a really amazing way that UCLA gives me opportunities in many different facets of disability culture and advocacy.

 

Dr.  Wendy Slusser  04:17

Thank you, Carolanne. Well, before we get to Michael, I’d like to just unpack two things that you said that might help the listeners understand what you do more. What is Paralympics, what’s the difference between that and Special Olympics for instance?

 

Carolanne Link  04:31

Ah, okay, so the Paralympics started in 1960. It is a world class elite sporting competition in parallel to the Olympics, which of course is an able bodied sporting competition. And the difference between the Paralympics and the Special Olympics are two main prongs. One is the fact that the Special Olympics is specifically for those who have an intellectual impairment. While there are certain events in the paralympics that have intellectual impairment athletes, it’s mostly for physical impairments which have seven different categories, physical impairment and visual impairments. And then additionally, the Special Olympics is built on a culture of how sport and community come together to build healthy lifestyles, while Paralympics as I said before parallels the Olympics in this structure of elite and world class competition, so while the special olympics have world games and international renown it has a different structure and a different organizing body than the Paralympics do.

 

Dr.  Wendy Slusser  05:38

That’s very important for all of us to understand and I understand that that’s where the Paralympics, when you say in parallel with the Olympics, they are held in the same space or the same town that the Olympics would be held, is that correct?

 

Carolanne Link  05:52

That’s correct, since 1988 in Seoul the Olympics and Paralympics have been hosted in the same host city. This happened after actually LA hosted in 1984, because there were some organizing difficulties and therefore the Paralympics ended up not being in Los Angeles at all, they actually were host partially in New York and partially in Stokes Mandeville in the United Kingdom. And because of that organizing issue, they decided that for Seoul and for the games at going forward, that it should be hosted together with the same resources and give it that symbiotic relationship so that the Paralympics could help grow off of the momentum that the Olympics had and that the Olympics could include more diversity in perspective by having the Paralympics be a partner as well.

 

Dr.  Wendy Slusser  06:40

And so it’s in the summer, the Paralympics are always coincident with the Summer Olympics that’s correct is that how it works?

 

Carolanne Link  06:48

They are parallel in both the summer and the winter, so there are both, and it’s on the same rotation, so as most people know the Summer Olympics is on a four year rotation, next one which was supposed to be this year in 2020, the last one which was Rio in 2016, but on the other even year, so it’s 18 and 22 in this case, they also have a Winter Olympics and the Winter Paralympics which also partner and run parallel to each other.

 

Michael Garafola  07:15

So one more question about that, and then we’ll talk to Michael because I do know he has a lot to talk about with the adaptive forts and Paralympics certainly is the feather in the cap for many of these adaptive sports. I recall how you got this job at UCLA and I think it would be great for grads who are on their way to looking for jobs to be inspired by the story of has a graduating UCLA senior found a way to really parlay your passion and interest and knowledge of UCLA to a job.

 

Carolanne Link  07:49

Yes of course, so as I came to the end of my undergraduate study I also was becoming more and more comfortable with my disabled identity. While I have been disabled from birth, congenital cerebral palsy, I became a wheelchair user much later in my late teens due to wear and tear on my body. And so there was a huge shift for me identity wise and I became more and more active in the disabled community, which is how I ended up going to the UCOD meetings, how i ended up meeting Michael and participating in adaptive rec. And so I became more interested in exploring these resources and ways that I could advocate. And at the time I was a student worker with the Semel HCI center team, and I had my boss Senna, at the time, who was very enthused about ways that I could take this knowledge, this very special knowledge, and use it constructively to help the campus, and so we came up with this project called the ACI accessibility toolkit to help those planning events on campus to make it more accessible to those with physical disabilities. And so I spent six months after graduation working as a disability consultant with Healthy Campus to create this awesome website that has all of these tips, all this technical knowledge, from the ADEI and checklists to help you just conceptualize event planning differently and go into it thinking about accessibility, and at the forefront, instead of as an afterthought, because when it’s an afterthought, it becomes a burden not only on the planners, but it also can make events feel unaccessible, inaccessible to the participants who need accommodations and certain degrees of accessibility, so that was an amazing project that I’m super proud of. And so while working on that project, I developed relationships with different disability resources on campus, and I came into the current job I currently have because my boss currently was a part of the DCP and saw me doing a bunch of advocacy work and research for this project. And so when my contract ended, he notified me that there was a position open in the DCP office, which is the Disabilities and Computing Program, which is out of the office for information technologies. And I applied for it and things worked out. And as I said, I love what I do, and so excited to be a part of accessibility and disability advocacy in a new way.

 

Michael Garafola  10:19

Great, so the key ingredients are, Carolanne looked at her strengths, she went with her passion, she had a creative idea that a group was willing to support, and she showed how effective she was, and that’s often how many people can get a position or be recruited for a position. So as you mentioned earlier, in your conversation of when you met Michael, is how important he is to your growth on campus and being more in tune with your abilities. And so I’d love to hear from Michael, not only what brought you to UCLA, but also your insights on the Paralympics, but also as a mentor for Carolanne. What would you say was your memories of when you first met with her? So let’s start with the first question. Just talk about yourself and what brought you to UCLA. Awesome, super stoked to be here. My name is Michael Garafola, and I work for UCLA recreation, and I run adaptive programs for UCLA recreation. My journey, I’m going to take you guys back many, many years. My journey started in 1990. I was injured in a car accident when I was 15 years old. I was an athlete before I was injured. I played high school sports for one year, but I was playing when I was in elementary school and literally since I can reach the basketball hoop, I was playing basketball, but the element of sports was gone for me after I was injured, no one told me about what Carolanne was just talking about. No one told me about the Paralympics, I thought it was the Special Olympics. So I love that you asked Wendy, what’s the difference between the Special Olympics and the Paralympics, because as a 15 year old, newly injured spinal cord injury, I didn’t know what that was. I didn’t know if I was allowed to play for the Special Olympics, and I didn’t know what the Paralympics were. So I basically lost out on almost 13 years of my athletic career, or my recreational career, because I didn’t know, so a lack of information kind of was a barrier to access for me. So fast forward in 1999, I moved from New York, from Staten Island, New York to Los Angeles, and I was dating a girl at the time, and we were having some troubles and we wound up parting ways. But in that time, she had gotten a brochure for the Lakers wheelchair basketball team, and I was searching for something in my life. I did not work and adaptive sports, I actually worked in the music business when I first got to Los Angeles. So I was not on a sports path yet alone and adaptive sports path. I picked up this brochure, called up the gentleman that runs the team, and he asked me what my injury was, and if I’d ever played wheelchair sports before, and I went down to a gym in East LA and started watching these guys and was just blown away. I had never seen a sports wheelchair. I had never seen people in wheelchairs, doing anything but wheeling around the malls and the places in our little town in Staten Island, so I was blown away. I started making up for lost time. I started participating and just trying every adaptive sport that was out there from waterskiing, to hand cycling, to basketball, to tennis, pretty much anything that I saw, I wanted to try, again making up for lost time and getting back into life as an athlete. The good thing in my life was that I filled those 13 years with other positive things. I went to school, got a degree in college, but I’ve seen a lot of people who don’t have those things, go down the wrong path, and not have such a productive sort of lifestyle. So I am grateful to my family and friends because they kind of helped me, I call it my therapy, they were my therapy for those 13 years, and it filled that void of sport that was missing. So I was healthy mentally and physically, at the time when I started playing adaptive sports. It also led me to UCLA. I actually started participating in the adaptive program at UCLA with my old boss and mentor, Dr. Jamie Hoffman. She started the adaptive program at UCLA. She was an aquatics director and approached Mick DeLuca and said she wanted to start an adaptive program and Mick being the visionary and understanding adaptive sports and sports in general and people in general, he said yes. And that started the program, Mick is just a proponent. He just gets this whole world that we live in, in this adaptive and physical disability world. So I started participating, which gave me and then I started volunteering with her and helping with certain programs. And then I actually started working part time with her. Jamie actually was moving on to another job, so I thought to myself and to UCLA, I said I’ve been around, and you said it earlier that Carolien kind of knew the UCLA system. And that was one of my advantages. I had enough experience as a volunteer and a participant to understand a little piece of how recreation was running and being ran. So I interviewed for her job and UCLA, we discussed me going back to school for therapeutic recreation. I went back to Cal State Long Beach and received the therapeutic recreation certificate from them. And I am a CTRS to-be. So I’m not certified yet, I have to pass the exam, the written exam to become a certified, so a CTRS is certified therapeutic recreation specialists. And he’s the knowledge behind the practical, I add a lot of practical knowledge I was, I call it in the trenches, I was out in the field, as an athlete, never really considered myself, probably still don’t consider myself a mentor. When I talk about students and people like Carolyn, I kind of say, my friend, my friend, Carolanne, I never say the girl that I mentor or things like that. But someone helped me, as cliche as that is, people took me under their wings, knowing that I had a late start to the adaptive game. And I just, I always wanted to help people, I never knew how. My mother used to say you should go out and talk to people. And the stubborn Italian kid from Staten Island that said, I’m not doing that that’s stupid, I don’t want to talk to people. I just was doing my thing, basically. But yet, people would notice that I would have conversations with people, and not only would I help them, they would help me, I would figure out a new way to do something in this disability world, whether it was physically learning the wheelchair or navigating a space and things like that. So I found that I was in this world, even though I didn’t know formally that I was in this world of adaptive and being mentored and mentoring people. So for me, the universe put me on this path, and it’s been an incredible path for me. And I just, I love sports. I think it’s amazing. And I love helping people who don’t have sports, recreation, and things in their life discovered, because I was that kid basically that lost out or didn’t have this in my life for so many years, so I know how important it is. And, again, as big a fan of sports and recreation as I am, I know that it’s so much more than that. It’s about community, it’s about meeting people with similar disabilities, getting out there and just being a part of something. Because unfortunately, there aren’t as many opportunities for individuals with physical disabilities to get out and play and participate in things like sport and recreation. It has come a long way, Carolanne has given you the history, and it’s been around for many, many years, but we’re still not at the forefront. The information is not easily accessible. And programs are not easy to join and to be a part of, so that’s another thing that we’re working on. So to answer your question from 30 minutes ago, Wendy, I met Carolanne. And for me again, seeing I call it transformation. I don’t know if that’s a great word, but coming in everyone seems to be, I mean Carolyn wasn’t timid, but seeing people when they first come into that element and trying adaptive sports, it is intimidating, I think. It’s a different chair, and it’s you know, you’re not in your comfortable chair, in your everyday chair, which you’re used to. It’s different people, it’s different people with different competitive fires, and people who are more laid back, and you’re learning how to navigate the group, get along, navigate the sport. But I think Carolanne, again, from the get go, I sense that Carolyn had a mentorship mentality as well. Because the great thing about Carolanne, and it’s great to have someone participate and play with us, but it’s also, you know, I rely on the people in the program, to be mentors, to be coaches, to be advocates for disability and sport. And from the get go, Carolanne was and still does, obviously helps people teaches them. People that pick it up quickly, like Carolanne and who can pass it on and explain it in terms that make sense to someone with a disability. And also keeping in mind that there’s an emotional component involved, that this is scary for people. I see Carolanne as a mentor, as well. And I think that started in the beginning. And then on the sports side, just watching Carolanne grow in the sport and you know, getting better at shooting and understanding, specifically wheelchair basketball, because that is a sport that we we’ve played the most together. It’s just a pleasure. It’s kind of what it’s all about. And I get to sit back and watch them and also learn from the things that the participants do. Because sometimes you need to take a step back and think and see it through the eyes of the participant, not just the one who’s leading the events. So it’s been awesome. We miss it. I’m sure Carolyn, you miss it, too. This pandemic sidetracked us a bit. I’ve missed those Tuesdays for wheelchair basketball, but just knowing that it’s there, knowing that we’ll pick up when this is over is the bright light.

 

Dr.  Wendy Slusser  19:48

So Michael, you’ve covered a lot of ground and I feel that part of your story of how you came to UCLA and got your job is sort of similar to Carolanne’s in the sense that you started out as a volunteer, and you grew with a program and then got hired. it’s very interesting because actually, for me, I first started as a volunteer at Venice Family Clinic, which is part of UCLA, and then got hired. And now 25 years later, I’ve been at UCLA. So it’s a great, I think, lesson for all of us to know, to go and do what you care about, and it might turn into a job potentially not that we all expected that, but that’s what happened. I’d love you to explain a little bit also, Michael, about the degree you were describing, because that’s probably also something a lot of people aren’t aware of, that is that kind of certificate that you worked on at Cal State, was it Long Beach did you say, so what exactly does that entail? And how did that also influence just, you even play sports?

 

Michael Garafola  20:53

It’s a great question. I again, as I said earlier, I had a lot of practical knowledge. I was playing and out there learning from other coaches, I went to basketball camps, I was actually invited to try out for the men’s Paralympic basketball team in my third year of playing wheelchair basketball, so I got a ton of knowledge and a ton of exposure to it. But that educational side, I didn’t know, I didn’t know why we were doing certain things in this adaptive world, or what they, what I learned was the therapeutic recreation world. So it was super important to get that part of it, get that side of it. I think a lot of it was understanding or trying to understand, there’s so many disabilities and there’s not one, there wasn’t a manual for each disability, that was how do you make it work for multiple disabilities? How do you look at it through an inclusive lens? How do you adapt things for different people and stuff like that. So it was, it was the educational background, it was the history of disability, which is important to know and understand and was learning the ADA and things like that. So it was a lot of, it was the practical, and then it was anatomy and physiology, it was the body and things like that. So I think it was really important. And then also, I think inevitably, you’re surrounded by people who are in a similar field, so you’re learning from their stories. And I love that a lot of people I felt were listening to me. Now granted, I was a little bit older than the undergrads there. But I always thought it was just a real compliment when people would turn around, and if I was telling a story about adaptive when my personal experience, turn around and listen, can really take it in and come up to me after and say, hey, I want to volunteer, are there any other programs in the country. A part of it, oddly enough, is also a networking thing, because we’re all spread out all over Los Angeles. And it was an opportunity to figure out new places to volunteer, new sports that were happening, new activities, there was a lot of non traditional sports, hiking and voting and things like that, not just basketball and tennis, so it was a really good place to plug in to other like minded people. For me, it was important to, again, I’m not certified yet, but it’s important to be certified. It’s important to have that, so when you go and apply for grants and things like that, that you have, what they call, the alphabet soup next to your name to make sure that people know that you’re you know, you’ve got the background and what you’re doing.

 

Dr.  Wendy Slusser  23:15

So Michael, wheelchair basketball has been talked about a lot in this conversation. And I know Carolanne has recruited many people to that, Sanna being one who was a recent UCLA grad that worked for us at Semel HCI. You say, you know, people are afraid, though, and I think anyone would be whether they’re a wheelchair user or not, like, how do you teach someone to play wheelchair basketball? Like what does it take? Where do you start with?

 

Michael Garafola  23:45

Well, the first thing is, and Carolanne is an amazing recruiter, and we love that, that’s an important component of what we’re doing. And it’s open to able-bodied students and students with physical disabilities, and I think that’s one of the cooler things that we do. But the first thing is, and specifically for a student or community member with a physical disability, I think the first thing is, as you ask, I don’t like to say afraid, but it’s intimidating, and it’s a different environment, regardless of the sport that we’re playing, I think is just to make sure that they’re comfortable. And the way that I do that is, I tell people just come out and watch, just come and sit. A lot of people, and Carolanne, can attest this, they say what time is the game. Even as cliche or as basic as that is, I say, it’s not a game we’re not, we do play games, but you’re not, you’re not going to be thrown in. There’s not a referee. There’s no whistles, we’re not getting yelled at by a coach. It’s an open recreation event, and just come out and watch, just meet the other people. If you don’t want to go into a sports chair, you can stay in your everyday chair or even if you’re ambulatory and you don’t want to sit in a chair for now, that’s great. Come out and shoot with us and just meet the people. So for me, as lame as the term is, it’s a meet and greet in the beginning and that’s kind of how I think I get it. I think that It’s effective. It’s not as intimidating. I also get a lot of people on campus, when I’m wheeling around, I see someone in a chair who I’m assuming has a physical disability. And I say, do you want to play wheelchair with us, and they say no. And that’s great, too. Not everybody wants to play the sport. But what I do is I say, well it’s not just wheelchair basketball come out and meet, you know, there’s individuals with spinal cord injuries, and amputees, and CP and different types of disabilities, so maybe you can find a friend or a mentor, or you can find some information that you don’t have through that person. So basically, if you can get them to come out, I feel like that’s 90% of the battle. And when they do come out, we have sports chairs, UCLA has, we own I think about 20 or 19, sports chairs, specifically to wheelchair basketball. And if the person wants to, if they’re able to, if they feel comfortable, we’ll get them either out of their everyday wheelchair or if they’re an amputee and they feel comfortable, get them in the sports chair. And the first thing is just show them the safety things with the chairs and how the chairs work, and how they move and how they move differently if you are an everyday wheelchair user, how they move differently than the everyday chair, because a lot of people get in, and they want to do the same things that they’re do in the everyday chair. And they definitely perform at a different level. But once we get them in, we do some basic introductions just to make people a little bit more comfortable. We don’t like to get too personal. Sometimes, depending on the group, if we know the people in the group, we can ask to share our disability. It’s not the common thing that we do. But most of the time, we’ll just say something, what did you do over the holiday, if it was a Christmas vacation or something like that just to get people comfortable, do some stretching, do some warm up drills push a little bit. And the great part is and again, I said this earlier, with people like Carolyn with people, like my fiancé, who comes up, Tiffany, and helps and then other volunteers that we have, friends that run it, and then eventually participants that wind up becoming informal volunteers. If there’s 10 people or 15 people, I don’t have to go to every group, like for instance, Carolanne, take a group of five or six or whatever it is, and teach them the same things that we just spoke about, because she’s been doing it for many years now. So that’s the great part of it. And a lot of times, which is interesting, it’s great if there’s a female with a disability, it’s easier sometimes to relate to another female. And that’s the great thing. And if it’s someone with a spinal cord injury, they may might relate to me a little bit better. And if someone has CP, Carolyn can explain the differences and the challenges with that. So it’s really a team effort, I always get embarrassed, I don’t like taking credit for it, because, it’s really, without the participants, without the friends and the volunteers it’s hard to run. So I rely heavily on a lot of the participants and volunteers to help out. And I think that’s effective. I think that’s part of why I rely so heavily on it. It’s because it’s super effective.

 

Dr.  Wendy Slusser  27:56

Yeah. And I know how much you have grown that program and tell me where it’s, what’s happened to it. And how are you feeling right now during COVID?

 

Michael Garafola  28:06

Well, right now, I’m blessed to still have a job through silly recreation. And we’re all working on different subcommittees. One of the subcommittee’s that I’m on is the Facilities Reopening Committee. And first off, personally, it’s been challenging. You don’t realize how much you do until you’re not doing it, so just the physical stuff, it kind of leads into another discussion. But there’s already limited opportunities for individuals with physical disabilities to exercise, to participate in sports and rec. So it’s been really challenging for me personally, to figure out how to stay healthy physically, how to get out and be active and be safe as well and not have access to a gym, where all the sports chairs and things like that. So another part of it is equipment. If you don’t have a lot of this equipment, it’s really hard to participate. And not every individual owns a sports chair, or a race chair, or a trainer, or even a gym, or weights and things like that. So you kind of have to be even more creative. So it’s been very challenging for me personally and programmatically as well. I’m not a physical fitness instructor, I’m not a trainer. So when you’re doing the sports, it’s fun, and you can have people go kind of at their own rate, but I’m not leading a weightlifting class or a virtual yoga class. It’s not my area of expertise. But thankfully UCLA recreation does do that. And they do offer programs that do have those components that students and people with physical disabilities are able to participate in and they’re modifying, and they’re adapting those programs to work for those individuals. So it’s been, it’s been challenging. I obviously miss wheelchair basketball, for many reasons, a lot of the reasons that we talked about just the social aspect and keeping in touch with our friends and our colleagues and the students that we work with. It’s been challenging. It’s been hard to stay in shape, obviously, and then the big part of it is the opportunities. They’re just, there aren’t, in a perfect world, in a non COVID world, there aren’t hundreds of opportunities for people with physical disabilities to participate and that’s been kind of a bummer and it’s oddly enough in this time it’s always something that’s on our minds but now it’s kind of retaken focus on hey when this ends and hopefully it’s soon we need to get back and start really creating more opportunities for students for community members for people with physical disabilities to get out and play because there’s not very many and we’re just that group we feel like or I feel like, we’re that group that still kind of doesn’t fit in to these groups. We’re not the able-bodied group, we’re not part of the special olympics with cognitive and intellectual disabilities. Where do we fit in, where are these opportunities, how do we create these opportunities, and also where do people get the money to buy this equipment and things like that? And there are resources out there, there’s a lot of great resources, but it’s not easy to navigate this space, to get those things into fine programming and we also need coaches and mentors and people. Thats why I repeat myself people like Carolanne and people that are in our programs that go and pay it forward, that’s super important because I play wheelchair tennis and I don’t have a wheelchair tennis coach. They’re not, there’s not some directory where you can say I want a coach or a mentor, someone to show me how to use a race chair or hand cycle. You have to go through the grapevine, and you have to talk to your friends and you have to reach out and then kind of fall into it and that’s a lot of the problem with adaptive sports as many of us, including myself as I shared and Carolanne shared, we kind of fell into adaptive sports. We weren’t guided to it, we weren’t placed in it, we fell into it, and that’s a really, it’s a really bad way to do it and that’s how a lot of us are doing. We’re blessed to have fallen into it, but we don’t want to fall into it. We want people to be able to say if God forbid you’re in an accident and you wind up with a permanent physical disability, we want to be able to go here, find the resource, reach out, and get started, and that’s not how it is right now.

 

Dr.  Wendy Slusser  32:05

I think that COVID -19 pandemic has unveiled or magnified or brought a spotlight to a lot of inequity in our world, and one of the areas that you’re pointing out is the ability and the access for differently abled people to recreate and also just stay in shape right? So what kind of systematic approach would you see going forward that could build a more equitable and anti-prejudice future and specifically for those with physical challenges.

 

Carolanne Link  32:40

To start, I think I will start when I think about what I want to see for the future, what my vision for the future, for this demographic is perspective and cultural change. So in my mind, the biggest thing I see when I’m out and about doing advocacy for my job or for Paralympics or adaptive rec is this hesitancy to have the conversation, to talk about disability. As Michael was saying, there’s some hesitancy to show up to it after record disabled people. Some people think oh maybe that’s not for me maybe I’m not going to be good, maybe I’m going to be judged, or maybe I’m just not comfortable with my disability yet. And for able-bodied people, they’re like oh well that’s for them and creates the sense of other and that sense of other, that kind of subconscious alienation is what I think would be awesome to see just become non-existent, and one way I think that we can do that as far as the UCLA campus is concerned is as we do, we have an EDI office for equity, diversity, and inclusion, is just have disability conversations become more commonplace and have them become more comfortable. I think every time I talk to a group about digital accessibility for example, I very rarely come across someone who goes oh that’s not worth my time, or oh I don’t care. It’s always like wow I had no idea about this information, like I had no idea who to ask, I didn’t even know this was a problem, and that was the same idea for me with adaptive rec. When I was growing up as I said I was born with a disability and I never knew adaptive rec was for me. I didn’t know it existed. I didn’t know that I was eligible or that I could be a part of that community, and I feel like one of the biggest roadblocks in my life and that I see in the communities is this lack of access to information, because that’s what creates these incredibly isolating situations where you think you’re suffering alone or you’re dealing with your disability by yourself, and in COVID that is exacerbated by the actual physical isolation of some people not being attached to their needs anymore. As Michael was saying like Tuesday nights playing wheelchair basketball was not just about the physical fitness that we were all getting from being active. It was all about the community, the friends we were making, the experiences there that we shared together and could talk about and support each other. So as far as cultural change, just having conversations and becoming more aware, and being both able to talk about your experiences and to listen, because not only is it hard for people to find information, but of course, it’s hard for people to talk about some of these issues. It’s a very personal topic. As far as more tangible development, as I already touched on, I love to see enthusiasm for projects, especially at the university level, that move us forward, because the conversations are great, and the knowledge and dissemination is great. But I love seeing these projects pop up, where they go, Oh, we want to think about accessibility as well. And they seek the information. So as I mentioned before, like we’re doing this mapping project, and we’re finding out that a lot of different campus entities would love this information, they just didn’t know where to begin. For example, an application is, of course, LA 2028 and the idea that we can better prepare for thinking about accessibility on such a large scale. They estimate about 1900 wheelchair users being housed in the Athlete’s Village. Being able to adequately provide and accommodate all of these athletes would be an amazing challenge, but also something I think UCLA is equipped for. We just need to band together and do the work.

 

Dr.  Wendy Slusser  36:23

Excellent. I feel that culture change, education, outreach, those are really important to reduce prejudice, and also to build a more inclusive and accepting and empathetic. So those are really important ingredients in the Equity, Diversity, Inclusion office can definitely be a good place to emphasize that work. I agree.

 

Michael Garafola  36:48

To build on what Carolanne was saying too, I think one of the approaches that we share is, in the therapeutic recreation classes that I took, it was always societal attitudes towards individuals with disabilities. And well, that is valid and it’s a great point. I think what Carolanne and I do, and I think we do it really well, is we hate the expression, the squeaky wheel, because we don’t want to be seen as the squeaky wheel. And we don’t want to go brick by brick and fix every brick on campus. We want to have a bigger conversation about disability and also approach the conversation with class and dignity and not be angry about why don’t you know about this and why don’t you help the people with the disabilities? I think that’s a big part of it. It’s such an intimidating conversation and rightfully so. We don’t expect able bodied people to know everything about disability. So when you approach a conversation, it’s important to approach it in an open manner. Because sometimes, there’s a lot of things in your personal life where you are not so happy about things, and that carries into the conversation. And regardless of the topic, people don’t want to have conversations about things if there’s anger, and emotions involved. That being said, that doesn’t mean it’s not an emotional topic, or you can get angry, but it needs to be an open conversation for people to make change. And I think that is across the board. Right now, we’re learning, we’re seeing in our society, but that’s super important for us to know that it’s not here comes  the cranky, old crippled people with their complaints and their the stairs are too many, you know, the doors are too heavy and things like that. We need to get away from that and think universally on how can this help all of us, not just people with disabilities?

 

Dr.  Wendy Slusser  38:26

Very well said, Michael, and I think that your point about being open. That’s really what empathy is all about, being open because you can’t understand everybody’s culture, or we teach pediatric residents, not cultural sensitivity, more cultural openness, because we can’t be knowledgeable of everyone’s culture, but we can be open to everyone’s culture. Anyway, so let’s let’s end this podcast – love to hear who was the nominator and who was the nominee and in a brief one or two sentences, say why you nominated the nominee and then nominee, please tell me what did it make you feel to be nominated for the Eudaimonia award?

 

Carolanne Link  39:03

All right, so if you haven’t guessed already, I was the nominator. I nominated Michael for the Eudaimonia award. And as you probably have gathered from this episode, there are many reasons why he was well deserving of this award. But as we touched on a little bit for me, I was not exposed to adaptive rec until much later in my life. And he was the door for me to be exposed to all that for all these opportunities. And throughout that process from day one, until now, and I hope well into the future he will continue to be that for me and for many others. And that is a point that he’s super humble about and that I don’t think he gets enough recognition for.

 

Dr.  Wendy Slusser  39:47

Thank you, Carolanne. Well done. And Michael, how did it make you feel?

 

Michael Garafola  39:51

I was super surprised and excited. Again, I kind of am more The Wizard of Oz. I feel like I’m behind the scenes. I don’t really consider myself, the coach or the leader. I am comfortable with it, I just don’t see it that way. I just feel like we’re all in it together, so I was super honored and stoked. And on a personal level to know, as Carolyn just shared, to know that you’re helping or you’re in some way you’re affecting someone’s life in a positive way, whether it’s sports, or whatever else it is, is super important to me. Because, again, like I said, there are still people in my life, but there were people in my life that did the same for me. And sometimes you don’t realize it at first, and then you look back and say, well, this is why or part of the reason I am who I am. But I just know how important it is. And again, I feel like, I feel like we both won the award because Carolanne does so much in her personal life and does so much with her job and does so much in my programs. Again, I get the credit for it, but really, it’s really a team effort. And I wish we were all the heads of adaptive rec because I need the help. And without the participants and without the volunteers and the people in UCLA support, stuff doesn’t happen. So I’m super honored. I don’t, I feel deserving, but I just feel like it’s an award that we should all get because a lot of the people that I know are doing incredible work, especially in recreation, especially in this disability world, there’s a lot of people doing a lot of great things. So I was honored and super stoked that Carolanne  took the time to nominate me and I received the award.

 

Dr.  Wendy Slusser  41:21

Well, thank you, Michael and Carolanne, for all you do, for giving us the time today to talk to both of you and learn from your wisdoms and really look forward to the next phase of your work, which will be really important during the recovery and research in post COVID-19. Thank you once again, and have a great day.

 

Michael Garafola  41:21

Thank you. Thank you so much for having us.

 

Dr.  Wendy Slusser  41:51

Thank you for tuning into UCLA LiveWell. For more information about today’s episode and the resources mentioned, visit our website at healthy.ucla.edu/livewellpodcast. Today’s podcast was brought to you by the Semel Healthy Campus Initiative Center at UCLA. To stay up to date with our episodes, subscribe to UCLA LiveWell on Apple Podcasts, Spotify, or wherever you listen to podcasts. Get to know us a little better and follow us @healthyUCLA. If you think you know the perfect person for us to interview next, Tweet your idea to ask please. Have a wonderful rest of your day, and we hope you join us for our next episode as we explore new perspectives on health and well being.

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