Interview Date | March 27, 2020
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Jill: Welcome to the DisTopia Podcast where we look at disability from the inside out.
For the next several episodes, the DisTopia Podcast will be archiving DisArt’s My Dearest Friends Project, a project generously underwritten by the Ford Foundation.
The My Dearest Friends Project is a way to share our experiences, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate sisabled voices and perspectives in the midst of the COVID-19 pandemic.
Chris: The first component of this project is created in partnership with disabled artist Oaklee Thiele who is creating black and white illustrations in response to submissions from the disabled community.
What you are listening to now is a series of recorded conversations with disabled people about their individual experiences with the COVID19 pandemic, and the personal, cultural, and political alterations it has triggered. Guests are given the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions of individual passion, vocation, frustration, aspiration, and strategies for living an authentic and pride-filled disabled life.
Jill: Follow the project at @mydearestfriendsproject on Instagram, on Facebook and at DisArtNow.org.
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Robert: Hi, my name is Robert Andy Coombs. I am a disabled artist and activist. I am currently finishing up my masters in photography at Yale and right now I’m healthy so I don’t show…I don’t have any signs of the virus or anything like that. I’m a C4C5 quadripalegic. I rely heavily on my diaphragm and I don’t have the control of my abdominals to cough very well so my lungs are very susceptible for pneumonia. I’ve had aspiration pneumonia when they intubated me when I had my accident so (laughs) along with breaking my neck I also had to get over pneumonia when I was in the hospital. That was extremely difficult. For people like us we have to do chest PT, have people pounding on our chest to loosen up the secretions. Thankfully, I have a Cough Assist machine. It’s been almost 11 years since my accident and I haven’t had to use it. But the fact is if I do get sick, it doesn’t look good because…It all depends on my immune system, I guess, too. But yeah, it’s scary. Pneumonia is such a big deal in our community and just regular pneumonia is extremely hard to get through and it can be a life sentence for us, or a death sentence I should say.
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Jill: Yeah, that is scary. I’m sorry that you, I’m sorry that you have to think about these things and I wonder how you’re dealing with that.
Robert: I mean I’ve been taking it day by day. I also, it’s extremely important I do isolate myself. I have one roommate and he’s been working from home and we don’t go out. I go out once a day. Outside to take my dog out, to get some fresh air. But even then, I haven’t gone on a walk or anything. And also I have three caregivers which is also a concern; having people come into my house who could potentially have the virus. Thankfully, they have kids and they’re staying at home and isolating as well which is extremely important. As soon as they come in, I’m like, “wash your hands” with any sanitizing…wipe down all the hard surfaces, doorknobs, lightswitches, even my medication trays and just basically anything that they’re touching. I routinely will wipe everything down to make sure it’s disinfected. Mentally, I’m doing all right. I talk to my parents everyday which helps and try and limit the amount of news that’s coming in. Right now with school everyone’s just emailing constantly and it’s very overwhelming. Trying to figure everything out day by day. And that’s what you get use to after having a catastrophic injury like I did. You just really have to take it day by day and it’s a slow process. Everyday we’re learning something new and so, yeah, there’s a lot of staying inside and watching some dumb tv to turn your mind off a little bit. But that’s another thing. Being isolated and staying in your home; a lot of people with disabilities go through that everyday. Not just wheelchair users but people who have immune-compromised immune systems and this is our daily lives.
Chris: When you talked about caregiving and you have your caregivers. How did you navigate that with them? In other words you have these people who spend very intimate time with you, like I do, and you have people who do care for you but they also care for you, if you know what I mean. So there’s this community, right? How did you navigate that with them? Was it just assumed that they would keep coming or did you actually have to sit down and talk about it?
Robert: No, they know I need help and like I said they’re staying isolated as well and also they need their job as well so they need to be getting paid and everything like that. I think it was just assumed that they would keep coming in. All three of my caregivers, we have a great rapport, a great understanding relationship. If it does come to where one of them gets sick or can’t come in then thankfully I have a pretty good friend base that I could rely on but also I had to have conversations with my parents, too. My mom was like, “Do you need me? Do you need me to come in?” Right now I’m good but who’s to say if it gets worse.
Jill: Yeah, there’s a lot of unknowns and a lot that is really out of our control but it sounds like you’re at the control of the choices that other people make. That’s something that I’ve been noticing in the media, in particular, is the choices that other people are making that impact the greater population and I’m wondering what your reactions to those.
Robert: Well, the thing is. The disability community; we’re going to be the first people to go because we are compromised in that area so people spreading the virus without even knowing it or not showing symptoms or able bodied people tend to get better than we do. If it does become worse then the health care professionals are going to have to make a tough decision: who’s going to get better and who’s not. I mean that’s, that’s a huge scary thing to know if I get the virus and I’m doing good then someone’s going to have to make that choice whether they’re going to save someone who may get better or not.
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Jill: So I’d love for people to understand what your work is and how this has interrupted your work as well.
Robert: (laughs) Yeah, my focus is the realms of disability and sexuality, what that looks like. Specifically self portraits of myself with, during my intimate connections with other people. So, my artwork explores the intersections of those two topics and right now I’m trying to figure out how I can continue working and still making my art. So, I’m thinking a lot…Isolation and I think a lot of still lifes. My equipment. Yeah, just thinking of how to go forward and create more artwork.
Jill: Which is actually maybe as you figure it out it will help other people thinking about disability and sexuality and their connections with themselves and their own sexuality as a disabled person. I’m really curious to see where it takes you and sometimes when we’re forced in a different direction or to think different new possibilities come to light and I hope that’s the case for you.
Robert: Yeah. I was studying photography before my accident and my accident pushed me to explore different ideas and ways to photograph things. In a way hardship does make you create better work. I think in my case, anyways.
Chris: What do you want people to know about the disabled experience, about your disabled experience? What do you think is missing? What would you like to make sure is known?
Robert: What I think has been most successful is the disabled community with the online presence. A lot of where we get our information from is from these social media platforms and that’s where I think we see the lived experience of the disabled community, whereas, mainstream media is so focused on healthcare workers and people who are educated within the realms of disease and things like that. But when it comes to showing us, the media still…We’re the experts at this! We live it everyday. Yeah, I don’t know, I think the media is lacking the actual disabled presence whereas the social media outlets, a lot of people are advocating for it, for us as well as we are.
Jill: I’m wondering about how many of the decisions are making at a city, state, and national level involve disabled voices and advocates in the processes and the discussions and the final decisions. I don’t know that answer, but I wonder how things would look differently if there were more minority voices including from the disabled community.
Robert: It’s affecting everyone. I mean I hate to say it but if it was just affecting our community I don’t think there would be as much of a push to help us but because it’s affecting the able-bodied community as well it’s getting a lot more attention.
Jill: I’d agree 100% and the most poignant thing I’ve read with that respect is the fact that people have been asking for flexible work schedules, creativity in where they work, what work looks like and that balance and it’s not until now that people have been listened to.
Robert: Right, that’s something I haven’t even thought about. People who have been advocating working from home or going to school from home for years and now all of a sudden that it’s affecting this able-bodied community. It’s like, oh yeah, now we can do it. So, yeah, it’s really, it’s really frustrating when we try and make things work for us and our lives but people tend not to listen or care.
Chris: Well, I think again there’s an assumption and it’s one that we care a lot about and that it is that disabled people aren’t active participants in life but really what we’re talking about now is the assumption that we’re not active participants in the capitalism that runs this world. If we are not a resource that keeps that machine going then there’s bad feelings but there’s also people like this gentleman from, I can’t remember where, this congressperson who said, “Grandparents should be willing to die for the whole thing.” You know it’s a real clarifying moment in that sense and not, not for the good.
Robert: And it’s extremely frustrating because we could be part of this machine, this capitalism machine but just we’re never given opportunities for that. We’re looked at and you’re not going to be able to do the job. It’s discrimination and it’s alive and well. And we’re damned if we do and we’re damned if we don’t.
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Chris: Thanks for listening, be well, keep your distance, send us your comments, questions, and your 280 character submissions to hello@disartnow.org, and make sure to follow the My Dearest Friends Project on Instagram, Facebook and at DisArtNow.org. Thanks again to the Ford Foundation for their support of this work.