Grafi Stories EP 4: What we do when we don't work

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Woman:

‍Um. Um. I don’t really know where to start.

Woman 2:

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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:

eah, 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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