Part 2 Disabled Artists' Collective Kinetic Light: Lighting Designer Michael Maag

Episode 38 December 14, 2020 00:58:25
Part 2 Disabled Artists' Collective Kinetic Light: Lighting Designer Michael Maag
Freewheelin with Carden
Part 2 Disabled Artists' Collective Kinetic Light: Lighting Designer Michael Maag

Show Notes

Part 2 Disabled Artists' Collective Kinetic Light: Lighting Designer Michael Maag hosted by Carden Wyckoff


Who is Michael Maag?

What is Kinetic Light?

In this episode Michael and Carden talk about:


Connect with Michael

@kineticlightdance @longred

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Episode Transcript

Speaker 1 00:00:04 Hey, and welcome to free, willing with carton podcast on your host card and why cough, wheelchair warrior and disability advocate based in Atlanta, Georgia. On this podcast, we share stories of people with various disabilities and help to break down barriers for the disability community so that we can build allyship and a more inclusive world. If you like what you hear on the episode today, please rate, review and follow this podcast and share it with a friend. I'm giving a shout out to my friends that I access life. It is a mobile app that rates and reviews places on the built environment to break down barriers in transparency on the bathrooms, the interior, the parking, anytime that you go into a new place, you can find the mobile app on Google pie and Apple app store use the referral code card in my name C a R D E N. Speaker 1 00:00:54 When signing up today is part two of interviewing artists from Canada flight performing arts group. And joining me is Michael mag, who designed the intersection of lighting and projections for theater, dance, musicals, operas, and planetariums across the United States. So kind of going behind the scenes and he sculpts with light and shadow to create lighting environments that tell a story, believing that lighting and support of the performance is the key to unlocking our audience's emotions. He has built custom optics for productions in theaters, museums, planetariums, and also designs and builds electronics and lighting for costumes and scenery. As a paraplegic, Michael is passionate about bringing the perspective of the disabled artists to technical theater. He is currently the resident lighting director at the Oregon Shakespeare festival. His designs and creations have been seen on the festival stage for the last 20 years, as well as at arena stage Brooklyn Academy of music, Seattle repertory theater, Utah Shakespearean festival, Florida, studio theater, and many others. You can find Michael on Instagram at kinetic light dance and his personal Instagram long read and on Twitter long read. And here we go with the second part. Speaker 0 00:02:19 Okay. Speaker 1 00:02:19 Hi, Michael. Welcome to freewill with carton podcast. I'm excited to have you on here. Speaker 0 00:02:25 Hi, it's great to be here Speaker 1 00:02:27 And you are my second person that I have, uh, for kinetic light. And does I understand you are the lighting and projections designer for kinetic light, then you also are a paraplegic, so I'm really interested in hearing your story. So we could, we could start out with your work at kinetic light, and then we can talk about your disability and your spinal cord injury and how that's impacted you. Does that sound good? Speaker 0 00:02:53 That sounds great. Yeah. Speaker 1 00:02:55 All right. So talk to me and walk me through how you got started lighting and projections. I know you, uh, were really passionate about it in high school at a place. Speaker 0 00:03:07 Yeah, yeah. I started early and this is pre-injury. So this is before I joined our community and I was, uh, I moved from an all boys Jesuit high school. I moved across country and I ended up in a public school and I want to do it, figure out how to make friends and someone suggested, Hey, go join the theater. And I did. And I just immediately fell in love the moment that I put my hands on the controls. And in those days it was big handles that controlled, you know, whole bunch of lights at one time, you know, and there was only six handles and it was like one was, were red lights. One was for blue lights kind of thing. But I, I understood in, in empathy and in my head that what I was doing rather than controlling the levels of a light onstage, I was controlling the emotions of the audience. And I knew that light had this subconscious power to get into our minds. And obviously that's from a, you know, very specific perspective, but I was just really enthralled by that. So I immediately just jumped into the field and studied that in college. And then have, as soon as I got out of school, I started working and I, I haven't stopped since just keeps happening. Speaker 1 00:04:25 That's awesome. So when, when you were injured and have the, the bicycle injury where the car hit you and you ended up having a spinal cord injury, where did that mindset shift come from for now thinking about disabilities and how you can incorporate your passions into now this whole new world of yours. Speaker 0 00:04:50 Right. Right. I mean, as, as those of us that acquire a disability, understand it's a gigantic Mindshift right. And you know, it must be different for the people that are born with disabilities, but for us that acquired them. It's, it's an adjustment period and it's a, the world works differently than we expected it to. And I have to admit that I was very ignorant about the world of spinal cord injury and disability in general, I think is most able-bodied folk are. They just don't think about it. And so I, as part of the, as part of the process of recovery, getting back into it and trying to figure out how to adjust my life, I became aware not only of my mobility issues, the fact that I had to get around in a wheelchair. Now, I couldn't climb a ladder to get up to the catwalks. Speaker 0 00:05:41 I couldn't roll around, up in the grid, radically changing my physical interaction with the theater. I had to learn how to be a better communicator to the crew who were serving as my hands and feet in that situation. Luckily, I mean, it's amazing to me, you know, this happened after I had already established my career and that I also had an employer that understood that what they wanted from me was what was in my head, not necessarily what I could do with my hands and feet. And so that really is, is a blessing, you know, that they were able to go on that journey with me. And I don't think many employers actually out there in the world couldn't can think that way, which is really a shame, but, uh, maybe we're getting there. So anyway, it just kind of made me aware, you know, I spent some time at Craig hospital in Colorado, which has a big spinal cord injury recovery place. Speaker 0 00:06:32 And I became aware of different levels of spinal cord injury and how it affects us differently. And you know, that I'm very lucky that I have a T seven level injury. Right. And so that's not certainly as bad as the cervical level injury. Right. And so it's, it really shifts of course, as you move up and down the spine. Uh, and then I started becoming aware of other disabilities. I had a friend in junior high school that was blind and we spent a lot of time just playing games together. And so, you know, we had made adjustments to how to play chess together, uh, that kind of thing, and how to make it fair when we're playing chess together. Uh, so anyway, so I became, you know, became aware of like, okay, right, there's an adjustment for the blind folk. How is a lighting designer? Speaker 0 00:07:19 Do I communicate to folks with sight impairment? And that led to communications with Laurel and Alice about how we take the poetry that I'm putting into the lighting and communicate it to folks audibly. Right? And so that, that was a fascinating conversation. I learned about people that have different neurodiversity issues and one woman that I talked to experienced severe migraines with flaring white flaring around any image. And so I actually utilized that in one of our dance pieces to create a character that had that same kind of light flaring projections of that. So I'm hoping to reach out and communicate to as many people as I can with the art I liked from a wheelchair person's perspective. I'm always down here at this level, right? And so I want everything to come from our perspective and trying to make things both beautiful and ugly as is necessary. Speaker 0 00:08:27 And the piece to tell the story, but from my level as a wheelchair user, and then finding other ways to communicate it to other folks. And I have to admit that as a designer, I'm still learning. There are so many ways that people need to gather the information, different ways that they, their senses bring it into them, the way that they process it. And it's a continual study and it's really changed. What I thought was important about my art. What is more important about my art now is supporting and conveying the story in every way. I'm a trained lighting designer and projection designer. That's where I start, but I'm also reaching out into the other areas to do it as well. Speaker 1 00:09:14 Oh, wow. We have a lot to unfold. There is. This is so cool. I love how you, you were able to get feedback from other people with disabilities, with neuro-diversity and also from your friend who is blind and to take that feedback and then incorporate it into the lighting to create. And then whether it's an audible description and have that, I know they have that app, ADI mats automates automates. And what that does is it provides audio descriptions for those who are visually impaired or who are blind or have low vision. And can you walk me through kind of how that lighting is described in poetry language? Speaker 0 00:10:05 We usually, uh, the cool thing about that app is, is that as a user, you get to choose from different channels of description and as many of those channels as you want. So there is kind of a channel of sort of straight up description of the dance. And it's just talking about the moves that the dancers are making and almost in technical terms that are using references to dance terminology and the, and the environment, but there's no real reference to the visual environment that I'm creating with lights and projections. There's another channel that is just talking about the visuals. And so I work with the audio describer there to talk about my intention and the lighting, how I'm forwarding the arc, what the emotions are that I'm conveying with the lighting. We use a lot of tricks and lighting to help convey emotion. You know, there's, there's things that happen in our subconscious for most people about how we use the same colors to represent something I can use bread to represent jealousy instead of yellow, green. Speaker 0 00:11:15 Right. But if I do it three times, your subconscious will understand that. And so once I started establishing that, so then I can talk with the audio describer to kind of come up with a poetic description of what the lighting is going on. And luckily we have some amazing audio describers that are able to do that. And then of course we have other channels that are just a poetic reaction to the piece that might be drawing from the visuals, drawing from the dance, putting it all together. And then we have a channel that is adjust to the sounds of the dance, the wheels on the ramp, but bodies hitting the ramp, that kind of thing. So we're bringing all of that together to create something. And then, you know, there are many people that are sight impaired are fantastic at multi-channel audio. And, you know, the goal with autumn ANSYS is that we can deliver that all spatially separated in a way that makes sense. And you can listen to as many channels as you want, which I think is, which is great. It's very confusing for those of us with sight, because we're not used to multi-channel audio in that sense. So it, it can be off-putting if you're not used to it, I've gotten to the place where I really love it. And it's like listening to four books at the same time, but they're all about the same subject. Speaker 1 00:12:37 Yeah. Well, it's, it's also can be very overwhelming if you're not fully in tune with your D all the different senses, right? Because those descriptions are really the descriptions are there to create that emotion and that feeling and that sensation for those who are majority not to say that everyone, anyone can't use it, but just for the majority of those who are not cited, right. The color theory thing is really fascinating. I took a home branding course earlier this year on different colors and more like paint, but lighting also a lot of it is, is similar. So like your reds can be passion and love and anger and blood. Um, but, and then you have like yellow and oranges, which are usually more energetic and exciting, but also can mean a warning. Then if you have your blues, which can show trust and water. And so it's really amazing how much your subconscious picks up on and associates, different colors with different feelings in different meanings, right. Speaker 0 00:13:44 And that's cultural too, right. Red and white means something completely different in China than they do here. Right. So, um, we have to be really aware of where we're performing pieces and how that goes. Unfortunately, because of COVID our piece descent was supposed to go to Hong Kong, but it got canceled. And I was really excited to see, uh, to learn because when we're going to change the colors because of the piece was put together with, with a North American audience in mind. So that was really curious to talk to people and to hear what they got from it emotionally based on the color that we were presenting. Um, I, I was looking forward to that learning experience and I hope we have the opportunity to get back to that. Yeah, color's amazing. And you know, the one thing that we learned about color and the subconscious is is that even though we have these overriding cultural associations with color, there is that ability of the training. So if there's an angry moment on stage and I sidelight in red, and then there's another angry moment onstage and I side later and red, if I want you to feel that feeling of anger, I can now sidelight the scene and read before you see the moment to give you, press the sense that the anger is coming. And it's always after the third time, for some reason, that's just the way our brains work. So it's a really, it's a helpful trick to use in helping your audience get prepared for a moment emotionally. Speaker 1 00:15:23 So you are essentially pre you're foreshadowing, what we are going to feel just, I that's crazy to think about. Speaker 0 00:15:35 Yeah. And the great thing is is that if you're, I'm sorry, go ahead. I was just saying, if you're watching a piece of theater or dance, you're consciously not aware that I'm doing that to you. Right. Right. That's not, that's not what you're thinking about. You're watching those amazing dancers on stage. And then you're like, Oh, why am I feeling angry? What is this tension in me? Right. And then they clash. Right. And it's like, Oh right. You know? And so you're in the emotional space. So Alice, the choreographer, Laurel and drawn dancing, as well as Alice, we talk a lot about the arcs of the story. What are the emotions? What are we trying to convey? How are we getting the audience through our storyline in the same emotional state that we intend? We approach that from a lighting and projections point of view, a sound point of view. And of course, a choreographic point of view to get all of those things to work together. Speaker 1 00:16:33 Oh, cool. That's really good. It's good. It's really cool to get, to have some background behind the scenes kind of stuff. Cause when you go to a play or when you go and see a movie, you're not really thinking about all the technical work that is done, that really puts it to life because if you were to remove the lights or if you were to remove the sound, if you've ever watched a movie or a video with no sound, it's kind of just, you don't feel that emotion because lighting and sound really do so much to carry it forward. Speaker 0 00:17:06 Right. You know, and not to say, I mean, you know, we in theaters often do like just pure black box. It's like black curtains around black cubes. Actors, not in costume. Actors are amazing. They convey a huge amount of emotion, but the support of the correctly designed costume, scenery, lighting, sound projections, all of that adds up to creating a more impactful story. Whether you're trying to make people laugh or cry or be angry or be happy, whatever you're trying to do with your story, all of those things that together, you know, you're talking about behind the scenes, like for every actor on stage, there's probably 12 or more people backstage, right? There's the stage manager, the assistant stage manager, the lighting person, projection sound, sound audio one, which is the person that puts the mix on and off the people. Right. You know, stage hands that are flying things and moving scenery. And you know, so it adds up or drove cost, you know, there's, it just adds up very quickly. And that's not to mention that there was a shop that built the set and a shop that built all the costumes. So when you start adding all that up, you know, there's, you know, dozens of people behind every actor that you see on stage Speaker 1 00:18:22 To that point also though, because there are so much that goes into production for art and, you know, especially live art where it's theater, dance and opera. A lot of times, we're not really proactively thinking about how are we being inclusive for marginalized groups, for people with disabilities and what are you doing in your space to help break down those barriers? Speaker 0 00:18:49 The very first thing that we're doing specifically in kinetic light is, is that we're making a welcoming place and a specific intention of bringing disabled people into our company. That's the first thing we look for. Are you disabled? We're not excluding the able-bodied, but if you're disabled, that's, uh, that's, that's the, you know, the first thing we look for on your resume, I guess, is the way to put it. Um, we want people that have the voices, that creative process that I was talking about is, is informed by the voices of people like us. And so they create something that we need to bring to the stage. So we look for disabled people, we're starting a fellowship program. I don't even know if we're allowed to talk about that, but you know, we're looking for people that we want to bring from the disabled community and give them an opportunity to work at the level that we're at. Speaker 0 00:19:47 We're at the highest level of theater, we're not super commercial Broadway or whatever, but we're a great little dance company and we're providing opportunities for people that have disabilities. I also am the resident lighting designer at the Oregon Shakespeare festival. And we have a program called fair, which is fellowships assistance in terms of residences residencies. And in that program, it is specifically geared to bringing on people that are underserved and underrepresented in theater, regional theater, which the Oregon Shakespeare theater is, is I don't know, 99.9% white, especially in the technical areas. And we've been trying to break that down for about 20 years. I worked with a director named Kim bond with the group theater in Seattle. And he came down here and I followed him down and he created that program. And so I've been with it the beginning and we're looking for people of color, people with disabilities, people that are just underrepresented in our environment. Speaker 0 00:20:55 So the first thing we did is like go through typical internship providing kind of thing, must be able to lift 60 pounds, right? Y you know, lift is 60 pounds. If you're smart enough to do the lighting, right. Must have a bachelor's degree. Why, if you're good at like, those are the things that are exclusionary rather than inclusive, there's no equity in those. So I've been seeking equity in that way to bring in folks and train them, us ITT, which is the United States Institute of theater technology. Um, they have a gateway program, does the same thing. There's a convention every year, except for COVID years. And we bring people in the gateway program usually has about 12 participants, which are mentors and mentees. And I've participated where I've been assigned with a person. My last guy, Luke had a cerebral palsy in a wheelchair, and I was able to take him around, introduce him to everybody in the field at this giant convention is 5,000 people and you want it to be a sound engineer. Speaker 0 00:22:08 And so I was able to take him up to the console manufacturers and say, Hey guys, what do you have for Luke who has limited mobility in his hands? He's got a great ear. I've heard his mixes. He's fantastic, but your controls are all way out here too far for him to reach what's your portable option for him and get them thinking, and then get Luke in contact with them. Right? So immediately they're like, Oh, we have somebody to serve here. So that's been really good. And then the other thing that I do is that every three years, there's a conference called North American theater, engineers, architects, and consultants. And it's a conference about theater, architecture, primarily building theaters, and why we built theaters. And I go there every year and I give a presentation about inclusiveness and design backstage, not just for the audience, because the architects are almost 100% by law required to think about getting people in wheelchairs, the crappiest seats in the house. Speaker 0 00:23:17 Oh man, first I break down the, why do we have to have the crappiest seats in the house? Can we pass that? And then I get into that. Well, how about backstage? How do we make a passageway? That's wide enough per person in a wheelchair to get along the fly rail so that they can fly things. How can we get an elevator? Because you've got an elevator to take scenery up to the grid. Can we make an elevator and appropriate wide passageways for wheelchair user to be up in the grid? And then of course, I immediately somebody will raise their hand and they'll say, Michael, what would you do in the grid in a wheelchair? And I'm like, every thing did I would do on the ground if you design it so that I can safely do it, right. Speaker 0 00:24:07 I would work on the lighting and the rigging and I would make it work. Right. You know, and sometimes I have to get out from behind my little table and up on the stage and show them that I can pick up a pig iron and I can load it. And you can say, you know, that's my level of disability. There are people that are more and less. I'm certainly not the strongest person wheelchair user that exists by any means. There are people that could climb the ladder with their wheelchair. I can't do that. So think about how you're going to serve the wide band of people. And, you know, if you design it in, in the first place, it's not, you know, the big point that I make of course, is it not only serves the disabled community, but it serves everyone else at the Oregon Shakespeare festival. Speaker 0 00:24:58 We put in an elevator to get me from the lighting shop, which was in the basement up to the theater level. And that was a big expense for them. It cost $50,000. And it was really amazing to put that in place. I am the person that uses that the absolute beast who uses it the most, it's the wardrobe crew. They carry funds of heavy costumes up and down the stairs. We put it in the elevator and they rebuilt their racks to fit in the elevator perfectly. And now the costumes go up and down all day long. I have to wait in line to get to the elevator now. So there's costume racks moving is a priority here. Exactly. Right. Um, everybody benefits when we design it right the first time, and it's less expensive that elevator, um, there was actually a chef they intended to put in an elevator when they built the theater, but they didn't because they decided to spend the money on something else. And so it costs a lot more later to put it in. So, you know, Speaker 1 00:26:10 Yeah. Raise your hand if you haven't used in a elevator before Speaker 0 00:26:14 No one Speaker 1 00:26:16 That doesn't exist. Right. So yeah, there's, there's so many amazing points that you made just from universal access to ensuring equal access for all, not only benefits people with disabilities, but just everyone, even the costume designers and carrying them up and down the different levels and what you're doing with UST T and that bringing people into networking and then talking with other partners and pointing out where they can be better, like with the soundboard, like, you know, where your accessible controls on that town board so that anyone can, can use it. I know X-Box recently came out with a universally designed hand controller, which was really cool. It was in last year. So companies I think are starting to think more about it. Um, but definitely have a long way to go. So, and then also I thought was really interesting what you said about how the technician was it, the lighting technician field is primarily male dominated and Caucasian or white. Is that, is that what you said? Speaker 0 00:27:27 Yeah, it is. It's, uh, it's really changed at the Oregon Shakespeare festival since I've been in charge of their gliding department. That department is now predominantly female and, uh, there'll be positions are all held by females. And, um, we have been able to actually bring in people of color and hire them and retain them, give them positions where they feel welcomed, served, you know, but I feel like that's not universal as we tour shows. And I go out to other theaters with either with the dance stuff or with OSS touring stuff. I end up back in a place that is predominantly male and predominantly white, Caucasian. Speaker 1 00:28:12 Yeah. Something to continue to break down those barriers with. And it sounds like you're doing a lot of different things to, to really challenge what historically has been considered the typical person to complete the job and their technical field. And it's like, wait a second, who came up with those rules? You know, and why can't we change that? And I would just challenge any business and organization to take a look at those roles that have been around for a very long time and look at the physical aspects to it. If it's like Ricardo to lift 60 pounds and, you know, scale up mountains and stuff. And it's like, who, who created that? Like, why has that been that way? And what can we do to open up the doors for other people to apply to it who have a brain, but may not have that physical ability. Speaker 0 00:29:09 Yeah. And also like reaching out to people on the neuro-diversity spectrum. I was able to reach out to a person with some autism and they wanted to work in video and in projections. And I was able to kind of bring them on. They had specific needs as far as like, they wanted to feel safe and just in the interview process and have a known person with them that like blew her away. They were like, what are you talking about? Bring another person to the interview. I'm like, but that's what this person needs. What is there a problem? You know? And they were like, but we've never done it like that. And I'm like, and I was praying this person in. And then that person has a very specific like interest and focus instead of skills based around video editing, which really wasn't exactly what I was looking for and needed in this projection idea. But there was a whole task set of tasks as far as organizing my stuff, getting it in place. And this person was completely focused on that. He was able to just lock down and do what needed to be done without a whole lot of guidance either. Right. And so it was like, this is recognizing the skillset that is present in the person that you're looking for and not requiring them to be white or buff or male or straight, you know, none of that makes sense. It's about what needs to be done. Speaker 1 00:30:37 Yeah. A combination thing is definitely a whole nother topic of conversation, especially in like workforce development and basically having that advocate for those who necessarily aren't able to really communicate what they can do. And that I think the problem with a lot of interviews is that it really requires a lot of attention and emotion and those nonverbal cues, which not everyone can pick up on. Right. And it can be assumed that, Oh, you're not paying attention or, Oh, you're stupid. Or, um, but really they just need someone that understands them to be able to help guide that conversation and to be like, just let them show you, let them do it. And it'll, it'll blow your mind. I've seen that happen a few times, which is really awesome to have that support, especially in the workforce development sector. And then I think also just, you know, me being, I use a wheelchair as well, and I have a progressive muscular disease and the wheelchair seats in the theater. Have you cracked me up? There are always the Speaker 0 00:31:44 Absolutely. You wouldn't let your grandma's sit here. Why would you beat somebody? Why would you design a seat that she would have to sit in? Right. Speaker 1 00:31:54 I will say here in Atlanta, the Woodruff performing arts theater was completely redone and it's absolutely gorgeous. And the wheelchair seats and the, uh, wheelchair companion seat area is smack dab in the middle. And it, well, actually there's two places. So there's one that's like smack dab in the middle just after the first, just right after the first section. And then there's one all the way up on the, it's a small theater. So there's one up at the top of the theater, if you want to view it from that angle. Yeah. Speaker 0 00:32:31 That's the other important point, right? Is, is opportunity for it. Not all to be the same, right. Because I think for some people being the first row, like I hate movie theaters that I have to be in the first row. Right. Um, because I'm low and it's horrible for my neck and it's also sensory, even for me, it's too much. And I kind of thrive in this world of visual sense, it's know lots of stuff going on. And, uh, I really do appreciate it theater that has some options for me to pick where I want, where I want and put my wheelchair. Speaker 1 00:33:06 I had a really bad experience. One time forgot where I was, but they told me that I had to get out of my wheelchair because my wheelchair being in the, like me sitting in my wheelchair in the aisle was a safety hazard. Speaker 0 00:33:21 Yeah. That happened to me. I went to see a show on Broadway and one of the older theaters on Broadway. And I was like, then give me my money back because I can't, you know, I can't then I won't, they're not separating me from my wheelchair. That's not going to happen. Speaker 1 00:33:37 Exactly. I mean, I, I'm not going to, I mean, sure. My, my sister was with me and like, sure, I, she can transfer me, but at the same time, no, no, this is part of me. And they, they don't know, they just don't separate from each other. You either take all of me or none of me. Speaker 0 00:34:00 That's right. Speaker 1 00:34:02 It's always interesting. Um, and I think you, you've mentioned it a few times about having to really prove to the non-disabled community that you are capable of doing things, but also you don't have to be able to do your job with all the physical aspects of it. You have your, you have a brain and the experience that you have and what would you say to employers or just peers or any anyone else that would challenge you and just say, well, he uses a wheelchair. Speaker 0 00:34:36 Well, maybe I would start with, will you shut up, man? Um, yeah. Um, I think the important part is, is that we, we look at people as individuals and what, you know, if you're an employer, what you're looking for is what can this person bring to your business? And you have to look at the individual. If you're, if you're just going to be economically focused, then what can you bring? And there's, this is also we're in the middle of national disability employment month, employment awareness month, right? Beginning of that. And there's a lot of information out there that proves that hiring people with disabilities leads to greater retention, greater performance, and they make more money for you because they're there. And they're dedicated in a way that the general population is not. And so there's a lot of studies that show that there are a lot of examples, just search you to Google it. Speaker 0 00:35:43 Shit, I'm sorry, that's production. So the word, Google, that stuff, um, you know, it's out there. And so I would, I would challenge any employer directly about that, that question. I feel like I can do that. Cause I sit here in a position of privilege, right? I have basically two great jobs that I'm able to handle. And so I recognize that there are people out there that are fearful of disclosure and fearful of those interactions. And that's real, that's absolutely real. And we do need advocates. We do need people that are helping to pull folks up. So that's, I feel like that's my responsibility, both as a person that acquired my disability and as a person that has a position of privilege that I need to do anything I can to, to reach and bring employers on board and to bring folks up that are like me. Speaker 1 00:36:47 Yeah. The fearful of disclosure is, is really unfortunate. And it's really sad to hear that some people aren't scared are scared of being themselves. Yeah. And I know a teammate of mine who worked at a previous employer, he never disclosed his disability. And the reason for that is because he knew if he did. And that would mean that his, and he was trying to ask for a different insurance, that if he tried to change the insurance, it would change it for the entire company. And insurance rates would go up and he would be known of, well, this is the person that caused, this is the one. Right. And to live with that, it's kind of two-fold right. It's like, well, too bad. Like the world, isn't perfectly all non-disabled people. Right. But at the same time, it's also like, you don't want to be that burden. And that person that causes people that, you know, maybe a few extra dollars a month actually makes or breaks whether or not they can make rent on time. You know, there's just like a whole lot of other factors that you have to be sensitive to. Speaker 0 00:38:08 Yeah. That burden is real. And it's, you know, it's, it's reasonable for people to feel that way, but I also feel like we need to help people to ask for what they need and even demand what they need. And it's okay. We're, you know, in many areas in our society right now in the United States, anyway, we're becoming more aware people of individuals as individuals with the different needs. And we're finding ways to include them, create equity for them as opposed to equality, which is a different thing and bring them on board. And so we, we deserve that just as much as anyone else. And when we get to places, you know, you and I, before we got online, we're talking about intersectionality. When you start bringing in race, gender, sexual identity, gender identity, we start bringing any of that. Also on top of disability, it's just, it's so many strikes against a person that it, it can feel and can be overwhelming. And, you know, we need to address all of those, get those things better. It's it's the fights, not over that's for sure. Speaker 1 00:39:32 Right. It's always that saying that nothing without us, we're nothing about us without us. Absolutely. And you've recently mentioned that equity versus equality. I want to know what your take is on that. Speaker 0 00:39:47 Well, I think that the, you know, there's a kind of famous a graphic out there of like, you know, equality is everybody's given a bicycle, right. But there are people with different sizes and people like me, I actually need a hand cycle, not a bicycle with battles for the feet. Right. So equity is, is that I have a hand cycle, you know, equality is, is the, everybody's given a bicycle. And so that's the way I look at it is, is, is finding the thing that people need to do whatever the task is. And in this case, it's riding around on wheels, you know? Um, so I think that that's, that's my core way of thinking about it. And I think that equity is, is more, much, much more important. Speaker 1 00:40:40 I think that the hand cycle, that's a great imagery of thinking about equity versus equality. It's like, you hear, you got a seat at the table, but can you actually voice your opinion? And can you actually share your story if the table is to hire the microphone is too far away from you. Speaker 0 00:40:59 Right. Right. If you can't see up to the top of the table. Speaker 1 00:41:02 Exactly. Yeah. Tables bill for Jack and the giant Beanstalk, but we're in, we're sitting in a wheelchair, Speaker 0 00:41:11 I'm sure as a wheelchair user, you know, like you roll into a bar and all the bar tables are at stool height. Right. It's like, well, huh, that's weird. Why am I going to do this? Speaker 1 00:41:26 Well, I actually, what I've done on a number of occasions, I will pull out that bar chair, their bar stool, and you know, I'll have them sanitize it and I will actually eat off of Speaker 0 00:41:36 It. Right. Yeah. Because that's fair at the right Speaker 1 00:41:39 Place that is at the right level. And what's great in doing that. It makes a statement, not only, but it also the bartenders and the owners and the waitresses go, huh. Wow. You know, I didn't think about that. You know, I didn't think about the inequities there, but also at the same time, like, Oh, she's really creative, right. Because it's like, yeah. I mean, you're given a situation. You physically can't reach up to the top of the bar. It looks easy. It's like I can't raise my arms at high to eat and bring it to my brain, to my mouth. So you got to make, do with what you have. And I think that's what Speaker 0 00:42:21 That, you know, Hey, you're brilliant with that. And then B, that brings us back to the point of like, why did we hire people with disabilities? Because we are the most creative problem solvers we'll ever freaking run into. We can, whatever the situation is, Oh, I've got to get into this building and there's no fricking way. I'll figure out a way and we will, we will overcome whatever the thing is that you put in front of us. So those are the people you want to hire. We're creative problem solvers. And especially now in the way that, you know, things are going with the economy and everything else, we need creative problem solvers in all aspects of our lives. Speaker 1 00:43:02 Oh, totally. I always am interested. Or people ask me all the time, how has COVID affected your life and like the whole pandemic and just the world trending down. And, um, I want to hear what, what your, what your take is on that and how it's affected you. Speaker 0 00:43:21 I think, you know, first off in the, in the, in the short term, anyway, the Oregon Shakespeare festival is shut down. So I don't have employment and I don't have income. So that's changed a lot about my life. Luckily with kinetic light, we're still trying to work and we're finding ways to do things. You know, we've done some dance in place videos for various organizations like the Reuben foundation and the Lincoln center where the dancers are in their homes. And I've kind of directed them about set up the lighting like this in your house so that it kind of looks cool, you know? And, uh, we're working on, we have, uh, a five camera shoot of our piece descent and I'm directing that movie with an editor and a sound editor to kind of create a different, more impactful experience of that, that can be presented on a screen as opposed to on a stage. Speaker 0 00:44:15 So I'm finding ways to, to work, but it's also, it's very isolating, you know, I'm at home, there's the social contact thing is really, uh, it's, it's not there. Yeah. I can, I can function a little bit like that, but I also I'm finding that I'm a more socially needy person than I thought I was. I thought it was like, Oh, it's all on me. I can no, it's, you know, I need to be around people. I love people and I enjoy their company and their creativity and the energy. So I think that, you know, the, um, it was wonderful. Maybe even saying that sarcastically as zoom calls are, um, you know, it's, uh, it's not, it's not the same and, uh, no, um, calling when we can all get back together again, the hugging, so we can all get together the hugging in so we can hug it again. Right. Yeah. Speaker 1 00:45:18 Oh, Oh, interesting. I get it. Yeah. I think with COVID, it's really impacted people in all different ways and some losing job, no income and others still having a job, still having income, but realizing, you know, what about their caretakers and how is that going to impact them coming into my house and all of these services that people go and, you know, buying prescriptions, certain pharmacies have shut down, how do you get your prescription? So, um, yeah, Speaker 0 00:45:52 I was in hospital, recovering from a surgery when COVID broke out and, you know, it was, it was interesting because, you know, obviously everything changed there about their procedures and how they were handling things. And then I came out into a very different world than I went into before the surgery. And that felt a little, little strange and all of that followup care sort of continuing issues that have happened as a result of that. It's, it's kind of, it's changed how you get healthcare, right? What can happen? A lot of things they're wanting to do on video calls where they actually need to be physically examining you. And so you kind of have to get through a barrier to get that to happen. And then getting, just having to go to the ER, as I did last week, that's a scary experience because you know, you're going into an environment where you're probably exposing yourself, right. Speaker 0 00:46:52 And for those of us that have what they call co-morbidities other symptoms, other things that are possibly challenging for us, that that can be pretty scary, you know, it's and it's part of the choice. Right. You know, it's definitely in my thought process before going in last week was, Oh, I'm really sick. This is very scary. I need help. Hmm. Do I want to expose myself to COVID? Is it that bad question, Mark? You know, and I imagine that I'm not the only person that has had to have had to make that choice. And then of course I'm also unemployed and you know, how am I going to pay for this? You know? Speaker 1 00:47:37 Yeah. Because I'm sure it, without employment, you don't have healthcare anymore insurance, right? Yeah. Yeah. It's impacted it's. Wow. It really, it really does. It's so drastic from person to person. Yes. It's been not such a great year for a lot of people. Yeah. Especially I think for the disability community who is generally more vulnerable to different infections based on, you know, whatever their condition may be. Right. And then also just accessing healthcare. I think telemedicine has really transformed. I mean, I've been using telemedicine far before COVID happened. It's been really helpful for me cause I'm like, should I go all the way uptown to go to my dermatologist or, and just to have like a five minute checkup or can I just stay in the comfort of my own home and, you know, get really up close and personal on the camera and with good lighting and save me an hour and a half trip. Um, so yeah, I think telemedicine is just, it took a pandemic for it to really kick in which I'm thankful that sometimes. Yeah. Speaker 0 00:48:45 I think, yeah, you're right. There are a lot of benefits to it. And then there are times when it's like, Oh, that's just not enough. Speaker 1 00:48:53 Oh, don't get me wrong. Like you can't like, I have my clinic, my muscular dystrophy clinic coming up next week and that's a one once a year thing. And they're like, do you want to do telemedicine for it? And I'm like, you can't take measurements of my progression over zoom. Like, I'm sorry. You just can't like, so thankfully, no, I will, I will assume the risk, you know, take the precautions and make sure that I keep myself safe going up there because yeah. Not everything can be done over zoom and I very much, I miss all the person personal this vibe in the office and just everywhere. It's definitely changed. So that's, that's how COVID has changed a lot of people. Yeah. We certainly have covered a whole bunch of topics. Wow. Just it's really amazing. Is there anything that you want to talk about specifically about your spinal cord injury to wrap up like the last 10 minutes, maybe how some of the things that you use in your day to day to help share with others who maybe are newly injured or just maybe, maybe people don't know about types of equipment that you use? Speaker 0 00:50:04 Oh, sure. Yeah. We can get into that a little bit. I use a wheelchair. I have a, uh, both a manual chair and a power chair and Ashland, Oregon. I live in Southern Oregon and we're at the confluence of two mountain ranges that cascade, and this is Q and a Valley. So it is hilly AAF here. Right. There's a of Hills and I can get myself around a little bit, but not completely without the power chair. And so if I'm having to go any amount of distance in town, I know that I'm going to have to climb a Hill that I would be unable to do in my power chair or in my manual chair. So I use the power chair instead. I felt really lucky that I'm able to I'm in a position where I was able to do that by, you know, my manual chair is 17 years old now, but it's still going great. My head replaced the axle once that's, you know, that's about it. Speaker 1 00:51:01 Is that good? I don't know with manual chairs. Speaker 0 00:51:04 I don't know either. I, you know, it's, it seems kind of amazing to me, like, you know, last that long. Exactly. It's like, wow, that's pretty cool. That that's lasted that long. Um, yeah, I kind of figured it would be one of those things that you change out every five years, but, um, this thing's great. It just keeps on going and I've traveled Anaconda Prague with it, you know, and we rolled over the cobblestones and it's just, it keeps on ticking. So Speaker 1 00:51:31 Then in Europe, I know what that's like Speaker 0 00:51:34 Europe, Europe is definitely a challenge. Um, yeah, I called almost every building their check assessable. Right. Their idea of accessibility is up two steps or down two steps, Speaker 1 00:51:48 Especially in Germany. Yeah. Oh, why that's great Speaker 0 00:51:54 Cycle, which is great. I haven't been able to use it in a while. I've had some complications this last two years and I haven't been able to use it, but, uh, it was a great thing. And I'm looking forward to being able to get back to it. And I kind of get back to a little bit healthier state. Speaker 1 00:52:10 How does the hand cycle help you? Speaker 0 00:52:12 You know, it, it builds strength. Of course it builds endurance long and heart function. Right. And because you're just out there. Yeah, it's really kind of amazing. The other thing is just for me anyway, because I was a cyclist and I was, I was on a, uh, uh, not a protein, but an amateur team, you know, local local team. And so I was kind of really into it, loved both mountain biking and road biking. And so I really like, or something that is just amazing about the feeling of going fast under your own power, right. I've generated this power with my hands to, to get going the speed that I'm going in. And it was kind of feeling that wind and feeling that energy. And it's also a community or other, no matter where you are. And even here in Southern Oregon, I've found a couple of other hands cyclists, uh, folks with spinal cord injuries. And, you know, it's great when we can get together. And it's great when we can get together and race. Right. You know, we show up at a 10 K and we're like, okay, you guys are all running, but we're going to raise our hand cycles and we're going to be all y'all to the finish line. Speaker 1 00:53:24 That's yeah. Speaker 0 00:53:26 You know, and then of course there are the things that were a total surprise to me. Like you have to use a catheter, right. Um, uh, I guess lucky are specific and that I'm able to do straight cat thing, but Hey, surprise. You know, when you have a spinal cord injury, the first thing that goes away is bowel and bladder function. And I didn't know that before. And you know, it was a, it was a big adjustment. And as they told me at the time, you know, in a few years, you won't even think about it. It's just the way it's done. And that's absolutely true. And so I would say that to folks that have newly acquired or a spinal cord injury, or for whatever reason have neurogenic bladder, you know, you, you will get to a place where this becomes commonplace. You will get to a place where it's not something that makes you feel awkward or weird, and you will know how to function in a public restroom and in a place that, you know, you'll figure all of those things out and you will ultimately end up feeling comfortable about it and feel safe about it, but it does take time and it takes experience before you get there. Speaker 0 00:54:32 It's not instantaneous. Speaker 1 00:54:35 Yeah. What are some of the things that you like in the bathroom stall to help you with that maybe it's, you know, a trash can place to certain distance or the certain size, or maybe have like a foldout table, um, coming down from the land, not like a big table, just like a tiny little, like thing to complacent Speaker 0 00:54:57 Or something to like, you know, cause I have to deal with boob hand sanitizer catheter extension too, right? Yeah. So I think like the stalls, first of all, it's just enough room to get your wheelchair in with your, with your backpack on it. Cause you're in the airport and you have your backpack on the back of your wheelchair and it can't be just big enough for the wheelchair. It's got to be big enough for the wheelchair and the backpack, which is one of the things I talked to architects about it it's like the law says 54 inches of clear space. Just make it 60, just give us six more inches. Right. You know, that kind of stuff. Um, yeah, a little fold out table or a little shelf is great. A trash can in every stall would be absolutely perfect wash basins at the correct height and wash patients that are engineered so that all of the water doesn't end up on the countertop because I really don't need to be putting my arms and hands on your filthy water that you left behind, you know, all of that kind of stuff would be great. Speaker 0 00:55:59 Yeah. And I would really, you know, because after you, after you use the catheter, you have to throw it away so that trash can in the stall would be great. So I don't have to carry a catheter out while I'm willing out to throw away, you know, it's, I've gotten past the place where I'm embarrassed by it, but it is also one of those things where people look at you like WTF, is that, you know, cause they have no experience with this. Just do in Speaker 1 00:56:24 The bathroom, like perform surgery or something. Correct. Speaker 0 00:56:27 Yeah. Yeah. Oh, hang on. No decline. Yeah. So it's yeah. The world is not quite, quite up to speed on that. Bathrooms in general are challenging and I've definitely been in situations where the bathroom is just not accessible. You know, you, you either can't get in or the stalls too small and, or they don't have an accessible stall at all and you have to figure out how you're going to do it. And there are ways, you know, but it it's, uh, those people just get a big red Mark for me. And I don't go back to that business. You know, I'd like to know why, you know Speaker 1 00:57:06 Yup. A hundred percent. Well, thank you so much for sharing the equipment that you use in your daily life. But then also talking so much about intersectionality in lighting and arts and entertainment. And we talked about disability employment awareness month, and that's the month of October just promoting inclusion and equity. I'll say equity, not necessarily equality, but equity in everything that you do in that universally designed environment and access for everyone is just so critical. So thank you so much, Michael, for spending time with me and just sharing your story and your expertise has been really wonderful. I've certainly learned a lot. Speaker 0 00:57:55 Oh, well, thanks for the time card. And it's great to talk to you. Take care. Okay. You too. Thanks. Bye. Speaker 2 00:58:03 Bye. Thank you friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.

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