Episode 47: Marco Bailey (click for transcript)
Interview Date | April 24, 2020
JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit.
What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of disabled people, the core values of the disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled disabled life.
The second component of the My Dearest Friends project is created in partnership with disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a disabled community. Designed as an open invitation to the disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.
As is true for many of you, our desire for this project is to share our experiences as a disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.
[peaceful music slowly fades into gentle, pulsing electronic that plays through the first sentence]
MARCO: My name is Marco Bailey, and I’m a visually, hearing, and neuro-cognitively impaired care worker, single father, figure artist, and LGBT and disabilities inclusion activist. COVID-19 has impacted my health, access to healthcare, my employment and family relationships. I haven’t been able to accept employment in care facilities due to health risks to myself being asthmatic and having impairments to multiple senses, and due to the risk it poses on my family. Before COVID-19 struck Michigan, my son and I had just begun to adjust to our life in Grand Rapids and my life as an out queer parent with disabilities.
After fleeing from abuse of my marriage, we came to live with my 70-year-old grandmother. Coming from isolation and insecurity and going back into isolation has been very hard on us, both emotionally and socially. We’ve been adapting to a lot of changes in our lives. I live with impairment to three of five key senses: vision, hearing, touch, smell, and taste, those senses. I’m visually impaired, hearing impaired, neurologically impaired due to spinal damage of my cervical and thoracic spine. It is current belief that these impairments have affected my sense of smell as well as a consequence of limitedly understood triggers that my doctors are looking into right now still.
CHRIS: Your art has been just so, you’re doing some amazing things. And so, we just we really wanted to talk with you and see how you’re doing just to have a conversation.
MARCO: I don’t know many people at all in general, and I don’t know many other people with disabilities other than my parents. [chuckles]
JILL: My guess is that can feel kinds isolating.
MARCO: It is, in the sense that when I grew up, I couldn’t really talk about it because my parents kind of shamed it. So, talking about my disabilities or letting somebody really know that I had anything going on that was different from everybody else around me or the majority of people around me, I was really afraid of being in Special Education ’cause I had one friend that was in Special Education. And she just felt really stressed out all the time, and I didn’t want that ’cause I didn’t want to be treated differently. So, yeah, growing up was a bit different, I had a lot going on. It was stressful. [chuckles quietly]
JILL: That sounds like a lotta pressure to hide who you are.
MARCO: Yeah, it was. Yeah, I was hiding a lot of things when I was growing up. I came out as gay when I was a young teenager. And so, having both identities was often a bit of a struggle. Because I could talk openly about being gay, but the moment that I add in anything else that people get overwhelmed with all that’s going on with one person. I did talk to a lot of people. I was very social. A lot of people were very interested ’cause they would see what I had going on. And they’d go, “What I have going on isn’t nearly as rough as what you’re going through.” I’m like, “It’s just my childhood, my life.” I didn’t see it as really anything differently than that.
JILL: Which is hard because what you’re describing is the feeling that you were the one who was wrong.
MARCO: Yeah. I felt a lotta shame.
MARCO: I battled with that shame quite a bit. Like, I felt confident in myself, but at the same time it was hard to feel confident in myself. And I only recently, over the past few years, started accepting myself.
[gentle, pulsing electronic music break]
JILL: Yeah. That’s a big deal.
CHRIS: Yeah, and it’s something that is really beautiful too, you know, to get to that point of knowing who you are and being comfortable with that and being able to sort of find others to be heard, but also to be known. [child talking in the background quietly] I’m really curious, Marco, how does your art and the work that you do, some of the sculptures that you’ve done and some other work, too, but how does that creative outlet help, if at all?
MARCO: It helps a lot. I actually started getting into sculpture last year when I was going through a really rough, rough time. I was married, and finalizing divorce through COVID-19 ended up being delayed. But I was in a abusive relationship. It ended up being a huge outlet for me last year in being able to feel comfortable with myself and confident as a parent, as an individual, just in my life in general. So, I made a self-portrait, a full-sized self-portrait of myself. And it just kinda, it started with making a bust, and then I started making masks, and then I made a sculpture of myself.
JILL: And how did you find sculpture as the medium of choice?
MARCO: [child’s voice still chatting in the background] I’m very tactile. I can’t use colored pencils ’cause I can’t feel it on the paper. I’m just making an indentation. When I draw with graphite or with charcoal, I can feel it going across the paper, and I can touch it. I draw very pressed. And so, I started just by drawing, I draw people. I just I feel really connected to it. I’ve been doing that since I was about seven. It’s just it’s always been a great outlet for me. And sculpture, just it’s not the same as drawing. It’s easy in comparison to drawing. It just it’s like second nature. That’s what it feels like. I can just make it with my hands.
CHRIS: Is that something you did since you were a kid too, making things and building stuff?
MARCO: Yes. I was very artsy, more than just like with art. What I have to say is it brought in the whole art as in from literature to physically making things, and I really liked hiking a lot and going outside. We would go on field trips as a kid. And so, they would show us like survival forts and stuff. I would make all sorts of things outside, stuff and crafts inside. It just kind of grew into a better understanding of how to do all those things when I became an adult. So, whereas I was making stick forts as a kid, I just finished making a desk. [chuckles] [child voice still chatting happily in the background]
JILL: That’s fantastic. And it sounds like your son is such an important part of your life.
CHRIS: Tell us a bit about him. I would love to hear more about him.
MARCO: Well, he’s a very, very bright kid. He’s five, and he’s really big on reading. He’s very happy. He looks a lot like me, like all over. He’s like the spitting image of me when I was a little kid. So, it’s like an honor to be there for him and to raise him. It’s really important for me to be able to be there for him. He’s a really big light for me. People should be able to express themselves all the way up and be able to kind of just grow into their own person.
JILL: Well, he’s very lucky. It sounds like you give him and will give him space and unconditional love and acceptance to grow up and to be whoever it is that he needs or wants to be.
[gentle, pulsing electronic music break]
CHRIS: I’m really interested to hear more about what it was about the disabled community or what it was about your entree into disability. Maybe a year ago you saw some things about DisArt and LGBTQ movements and some of our artists. And I’d love to hear what was attractive to you about those ideas? What felt right to you?
MARCO: Well, it really comes from over the past few years, I haven’t been able to deny it from myself that I have this going on. I’ve been going to a lot of doctor’s appointments with a lot of specialists over the past three years so that I can find out what is what and how the doctors can actually help. That’s taken up a lot of my life over the past few years. And last year, I just kinda, I finally got a hearing aid. I finally found out what was going on with my spine. It became a problem for me. I started having episodes where suddenly, I couldn’t think or experience the world as I was anymore. It’s like becoming, it’s like somebody putting slow-mo on your life, and then you can’t talk. Or really, I ended up having trouble with moving my hands. So, it just kinda hit me: I just need to accept it and just kind of stop hiding, hiding it at all. So, I just started being more verbal about it and actually talk about it and just kinda looking into it, just into other people as well just so that I can not be denying community. Because the only people I was letting around me were people who couldn’t relate so that I could feel normal. I stopped letting myself tell myself that I wasn’t normal, you know, that it wasn’t normal to just to be myself and have everything that has been going on, that it is just, it’s a part of my life. It’s a part of me, but it doesn’t define me. It’s just a part of me. And it’s OK to talk about it, and it’s OK to let other people in about it and just kind of interact with them and kind of see where other people are.
CHRIS: Do you mind if I ask what it was like when you started letting people in and letting people know that about yourself?
MARCO: It was scary. It was really scary! Really overwhelming. But at the same time, it felt really good. So, I ended up having days where I was really excited about it, really happy. And then there were moments, there were days where whenever there’s a, whenever there was a problem, like I wouldn’t call it a problem, with communication when I was trying to communicate to my family about it. ‘Cause my family just kind of was just they always knew there was something going on, but nobody was willing to define it because of their own fear of socializing, not with me. Or I have a cousin who has autism, and it’s always been an awkward topic about anybody and having disabilities. So, talking about it and letting other people know in their social circles about something intimate like that, intimate information like that, that a lot of people view it as intimate to talk about it, rather than just being formality, but kind of breaking down the formality of it and just making it regular conversation.
JILL: Yeah, people often refer to that experience of what you’re talking about in the disability community as coming out. It sounds like that’s what you’ve done, both—
MARCO: I’ve come out in many ways! [chuckles]
JILL: In many ways, yes. And we have had lots of conversations. And one of the things that is standing out the most is this internalized ableism. Have you explored ableism and what that means or heard that word before?
MARCO: Not really.
JILL: It’s a word that I never heard until I came and started doing this work. It’s like racism but towards disabled people. It’s what you talk about, of you needing to fit an expectation.
MARCO: I get that at work all the time. [child chatting in the background again] I’m a caregiver and a resident aide. Sometimes it’s really hard to find work. I love what I do. But right now, I can’t do it because my grandma’s scared about it. So, I had to, since COVID-19 started, I actually had to say no to a job, even though financially, it’s been really hard for me to be able to set aside money so that I can get my own place for my son and I. Right now, we’re staying with my grandmother. So, whenever I’ve reached out for work, I always get… Because I can’t type this fast anymore. My hands, I just I don’t know what it is. Sometimes they just stop moving. And so, instead of typing like I learned in typing class in high school, I literally go like this sometimes because I end up, that’s the fastest I can type now. And it’s only 40 words for perm minute, and a lot of people don’t consider that enough. So, there’s a lot of jobs that I’ve had experience in that I used to be really good in.
Since I got my first job in high school, it’s been this kind of like, it feels really fast to me where everything’s just kind of getting harder and harder and harder and harder for me to do things, and I’m just having to adapt to it. So, I’ve had a bunch of different types of jobs because whenever I try to gain more experience in something, someone says, “We need somebody who’s able to do more in this way,” and I can’t provide that. It can be a little bit stressful to vocalize, not like anger, but not being OK with somebody, just kind of shoving me off to the side.
I had to stand up for myself at a job when they disclosed my medical information to all of the staff. They did a HIPAA violation. It was really difficult because the whole situation ended up happening over me having to take an emergency medical leave for medical testing. They weren’t able to fire me because of my physical ability. But they were able to kind of stigmatize me in my workplace. Everybody knew everything about me at that point, and it just wasn’t the same anymore. And I get that a lot in jobs now. Every new job I seem to get, it just, it follows me now. And I don’t like that at all! It’s just people don’t have to be weird about it. They don’t have to be weird about it at all.
CHRIS: Well, and that ableism that you’re talking about, one of the results of that— and it’s a result that I feel too as a wheelchair user— there’s a way in which ableism, which is again, you know, the standard of life is non-disabled. And so, it’s our job as disabled people to meet that requirement or to live like we are non-disabled. What it sounds like you’re experiencing is what I’ve experienced, what Jill’s experienced, what other people have experienced that—
JILL: Which, by the way, is BS. Just wanna throw that out there.
CHRIS: What do you mean?
MARCO: I think I agree.
JILL: That what you’re saying is that the expectation is.
CHRIS: Oh, yeah! Total BS! Yeah, yeah, yeah, of course.
JILL: That you assimilate. It’s basically assimilating to other people’s expectations and views of life, yeah.
CHRIS: Yeah. And that is bullshit. But here’s the problem. It puts the pressure on us, the disabled person, right, to live up to and to expend energy to meet the requirement, Right? So, it’s all our fault, right? [laughs] And so, again, for that example which you just shared, their sharing your medical history made it your responsibility to act in a way that would show them that that medical condition wouldn’t stop you from doing the job that you were asked to do. But that’s a pressure that’s put on you rather than a community working together to make sure that you were able to do the job in a way that you could do the job, right?
CHRIS: And that ableism is, it’s alive and well, man. It’s alive and well. And I’m so sorry that you’ve had to deal with it. But, you know, it helped me so much when I finally got that word because I could point to it. I could point and say, “Wait a minute. That’s ableism. And that hurts, you know, and it’s wrong. It’s wrong.”
MARCO: I completely agree. I’ve never felt OK with that. I used to advocate for other students when I was in high school and I ended up taking a. G.E.D. test so I could get kind of like out of a stressful environment of…. So, people talk when they’re in high school. The more you socialize, the more a person with disabilities socialize, the more you get, yes, you have a lot of people who are understanding, but you also get a lot of people who’s the exact opposite, and they just try to make things harder. I’ve never been a fan of people being bullies. So, when I grew up, when I was growing up, when I was in high school, I was very verbal about talking to people about what they had going on in their lives to try to navigate healthy ways to go about it, like communicating with their families. Because I came out at a young age, I ended up having to be very vocal about it ’cause nobody was OK with it. When I was coming out as LGBT and part of the LGBT community, being very vocal about it. So, I ended up having, I was advocating for myself as a queer person. And then later on, as I was leaving high school and going off into college, I met more people that even though they don’t have disabilities, everybody has their own problems. The word ableism and just people don’t like it people say mean things or just rude things that are just completely unnecessary, and it’s something that a lot of people could relate to. So, that’s my experience with fighting ableism is in general conversation with people.
JILL: I think that’s really interesting and fortunate for the people that you paid attention to along the way to help and support people.
[gentle, pulsing electronic music break]
JILL: One of the other things that we have been learning more and more is the value and the importance of a mentor or role model in people’s lives. And I’m wondering if you have anyone in your life that has been able to play that role in an important way for you.
MARCO: Yes, in a way. I’ve always had a really great relationship with my grandmother. She’s always been there since I was little. She just turned 70 today. She’s always been the calm in the kind of a hectic life. I used to go to my grandmother’s all the time, and sometimes we would just kinda go out and do things. And now, since I’ve been living with my grandmother, she’s been more of a mentor than just kind of a stable place to go. As an adult, she has been quite a bit of a mentor. She has a lot of really good advice about handling things. She has developed some very own health problems. She doesn’t do things the same way as she used to. We’ve been able to talk about, even though we have different things going on, my spine and her talking about what she has going on, we’ve been able to kind of help each other find better ways to manage. Both my grandma and I, we both go to physical therapy. We share things like exercises and what we’ve been told. It’s kind of really nice to hear from her what she has to say about things. It’s really comforting having somebody there who kinda helps you kinda learn the ropes in a way, in the mentor way.
CHRIS: That’s really great. That’s really great. And it also helps you know that you’re not alone, right? I mean, that’s what we all are looking for, right? If we can all find somebody or some group of people or some person that like you said, I like that, that sorta knows the ropes, I mean, that’s a really great way to put it, to have that person or have that community. Especially now, during this time of social distancing, that’s been so important. How has that been for you, the pandemic sorta life, you know, living with your son and your grandmother and social distancing? How is that been going for you?
MARCO: Well, luckily, my family hasn’t been suffering much financially. I live with my grandmother, so I’m not worried about paying rent, but my food bill doubled. And it went down a little bit, but the prices of everything here in Grand Rapids just kinda skyrocketed at a few stores. That really kinda took a hit because I didn’t have enough money for that. So, it affected me. Before we got the stay-at-home order, I’ve met one person outside, a friend that we haven’t seen each other in a year. So, I was like, you know what? She says that she’s been isolating. She hasn’t gone socializing. And it’s generally pretty safe. We both considered it pretty safe for us to go and meet. So, we did. My son ended up getting strep throat, and that really gave me a big scare ’cause we were all had just gotten over something. So, we were self-isolating right away because we had, every single one of us in the house, had started coming down with something. We figured it was seasonal, but it lasted for a few weeks.
So, because I haven’t been leaving the house much, I’ve been going outside and gardening. I’m really into horticulture. So, aside from my art, I do plant art, more than a green thumb. I’m really very much into plants and propagating. And I’m not an expert, but I know a lot. What a lotta people tell me, they tell me I know a lot about it. It relaxes me. It calms me a bit. And I get distracted in it a lot, to the point where I forget the amount of time that I’ve spent in the garden. My son comes out, and he gardens with me. Been doing that since he was little, so it’s been nice that because I haven’t been able to leave the house for work, I’ve been spending a lot of time with my son, just kind of finding new activities to do. And I’ve been doing some art as well. I finished a desk that I was making that involved me just kinda changing a few things about it. So, I was using a saw, and I drew something on it and painted on a shirt. It was a person. And I have another sculpture that I’ve been working on, but I don’t have the materials that I need for it. Which has been really troublesome because normally, when I go to get materials for my sculpture, I go to Menards. And I’m used to Menards in Lansing. It’s a lot bigger. There’s a lot more there. They sell fiberglass there. But here in Grand Rapids, the nearest location, they don’t have any of that stuff, and their prices have been pretty ridiculous there. They’ve had some price gouging.
So, I haven’t been drawing lately. I mostly, I’ve been doing a lotta things I don’t normally do, which is, I think, in its way, the isolation getting to me that, though I’m not very social, I am really social when I have someone I’m hanging out with. I’m a bit of an extroverted introvert. [laughs] I like to be able to get out and just having the statement of you can’t go outside really and go do a bunch of things makes me wonder of like, OK, to what extent is that actually OK for me to be going for a walk right now? And is it actually OK for me to do so? I don’t entirely understand the stay-at-home order very much. People have been telling me that they’re not exactly abiding by it, totally. They’re being responsible about it, but they’re not following the rules. And they’re just like, to me, I don’t—
I got really stressed out yesterday ’cause I’ve been going through a divorce. It just, it was supposed to finalize, and then the pandemic just kinda hit. And so, just got prolonged. It’s been really emotional. It’s just kind of like, I can’t leave my house. I feel like I’m not doing enough because I’m not able to go to work. And I have a job I know I’m able to do, but I can’t do it because my family’s uncomfortable about it. And it’s just like the responsible thing has become irresponsible!
I’m very practical person. I like rules. I like keeping everything in order. I use my agenda. I like fun things, but I’m not a very, I’m not a jokey person. I’m pretty serious. And so, it’s like I kinda like a flipped a switch since isolating in order to feel comfortable with being where I’m at right now and being able to not really kind of move forward with many things. I’ve been spreading a few things out. It’s kind of like my organization, that I normally have really good organization. I have a lot of things going on, so I feel like there’s more going on in my life. And I’ve been socializing in a way that I normally don’t do so that I could feel more active. So, it’s just kind of, it’s, it’s like a roller coaster for me right now. There are like really happy and calm days, and I kind of feel, I feel guilty about them. I feel guilty about sitting down and relaxing because I’m not used to it.
I’ve had some trouble with going to the pharmacy and getting medications. I have a couple medications that the pharmacies, they’ve been running out of stock on, and I had to go to a different city. And they messed it up three different times. So, it’s like…trying to keep any order with anything, like health, mentally and socially, it’s just and completely flipped upside down. [chuckles]
JILL: Yeah, you’re finding ways to adapt and navigate the new newness.
MARCO: Navigating. Yeah, I am. I know I’m adapting here and there. I know I wanna adapt better. I feel like last night, I was crying last night. I’ve been crying quite a bit since the pandemic started. Not like a daily thing, but like every other week, there will be like a moment where I’m by myself and everything’s kind of quiet, and I just I realize how stressed out I am. And then I kinda set up a plan for the next day of how I’m gonna better do things in the week to keep it more on a schedule. ‘Cause I’ve been having a hard time keeping a schedule.
JILL: Yeah, and you know what works best for you.
JILL: Yeah. [child’s voice in the background again]. You’ve shared a lot with us, Marco, and we appreciate that.
LUCIEN: Hello, again!
JILL: Hi, again.
MARCO: Hi, Lucien.
JILL: I’m Jill.
LUCIEN: What are you doing?
CHRIS: I don’t think they can hear.
JILL: Talking to your dad!
LUCIEN: I am Lucien this day.
CHRIS: Hi, Lucien. How are you? My name is Chris.
JILL: And I’m Jill.
CHRIS: What do you got, Legos? What do you got, Legos there?
LUCIEN: This is just a square.
CHRIS: It’s pretty awesome. [laughs]
LUCIEN: I got the way that we can talk to together.
[gentle, pulsing electronic music break slowly returns]
LUCIEN: And can I have the headset, please?
MARCO: I know you want to.
LUCIEN: I got the way—
MARCO: I know you want to.
LUCIEN: —that I can have the headset.
JILL and CHRIS: [laugh]
MARCO: Grandma’s having a birthday party today.
LUCIEN: Oh! I know but—
MARCO: We’re doing a social distance birthday party.
LUCIEN: —don’t forget your whole life!
CHRIS: Don’t forget your whole life. I get it.
JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.
Music: “Fluidscape” by Kevin MacLeod. Link: https://incompetech.filmmusic.io/song/3767-fluidscape. License: http://creativecommons.org/licenses/by/4.0/.