Podcast

Episode 51: Benjamin Merritt

Chris and Jill spent time talking about the power of language with Disabled artist Benjamin Merritt in this My Dearest Friends Project podcast episode.

Interview Date | May 5, 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 mellow music that plays through the next sentence]

BENJAMIN: Sometimes I try to think of chronic illness as my body’s way of keeping a promise.

I’m Benjamin Merritt. I’m a printmaker who lives in Minneapolis, Minnesota, but I’m originally from South Carolina. And I’m a printmaker and a poet. And a lot of my work recently has been revolving around the language that we use to describe illness and disability and sort of trying to take ownership of the way my body is described to me. I think for a long time, it was something that I struggled with, with doctors and people just looking at me or kind of like observing me would talk about me in a certain way. And I, for a long time, had a hard time taking agency over that. And now, this is my way of finding a language for that. And I think that that language tends to be something that’s not a stagnant thing. It’s always changing, which much like my body and everyone else’s body, is always changing. So, I find a very poetic kind of relationship to that.

As well as I think I’m going through a lot of things of like misdiagnosis and undiagnosable things. And even the urge in the medical community to focus on diagnosis, I’ve kind of thought about the idea of origins a lot in my work and trying to sort of mythologize why I have a disease and taking that, taking a poetic power over that as well. I think the whole origins thing is important to me, especially in this age of COVID, where I think people are starting to see very publicly how the stories and origins that we tell of illness very much affect the realities of it. I think politicizing COVID from like the Trump perspective of him calling it “the Chinese virus” is a very, is a way to create a xenophobic rhetoric around COVID-19. The AIDS crisis was problematized because of the way it was thought of and its origins. And I think it’s important to take ownership over that and try to change the discourse we have. So, that’s kind of what my work focuses around.

CHRIS: And so, there seems to be a kind of liberatory element of your work too, like a sort of removing bodies from a certain syntax of meaning, right? And sort of liberating not only yourself, but also the world in general of a sort of pathologized understanding of the body. Do you think about liberatory elements of your work?

BENJAMIN: For sure. Yeah, I do. I think that’s been a huge part about it for me is like, yeah, that idea of liberation or reclaiming ownership over the language in a way. It’s opened up so many new ways for me to think about my body that I think has given me a much healthier relationship to it. That’s one of the best things ever to hear when people respond to my work is that it had an impact on the way they felt, too. Language builds community in such an important way, and when we are forced to talk about it in medical terms or ways that feel untrue. Like especially with autoimmune disease, I’ve been really like— For a long time, they were just like, oh, well, your body’s attacking itself. And so, just that idea of my body attacking itself was such a disruptive thing in my head, and it became second nature to think that way. So, I think yeah, this idea of liberation and thinking differently is very important.

Sometimes I don’t only think of chronic illnesses a promise. Sometimes I hate it. Again, it’s like, you know, it’s a very different relationship. Sometimes I’m very happy. Sometimes I’m not. Sometimes it hurts worse than I can ever imagine. And I want to just get out of the pain. And sometimes I’m thinking very beautifully of it. That shows how human it is and how important it is to not think of just like the binary between healthy and sick or abled and disabled. Blurring those boundaries are very important.

[mellow music break]

JILL: How did you come to be where you are today, both as an artist and in your relationship with your body?

BENJAMIN: So, I’m pretty young. I’m 22. So, I just graduated from my college. But I was sort of experiencing a lot of weird symptoms and things happening with like cysts around my face when I was about 15 years old. So, I went to a dermatologist in South Carolina, and he was like, oh, this is just teenage acne, whatever. And I was a young boy. And he was like, maybe you should stop playing video games and drinking soda, and you’ll feel better. And I was like, OK. [laughs] And that didn’t really help that much at all because that wasn’t what it was. And I went to another dermatologist, and he was like, oh yeah, this’ll go away. It was really just getting worse to, like spread around my chest. And it was like these giant cysts that were opening up. Giant parts of my body. I was bleeding a lot. And I went to school with Band-Aids everywhere because I was just like leaking puss and blood. And it was like really not a great thing to experience in high school.

It was getting super, super bad until the point where they were like, oh, well, it’s like a skin thing, so it’s acne. So, just take Accutane. I took a very high dose of that ‘cause they were like, let’s just get it out. Let’s like, do that. And that ended up just putting me, I was in bed for like a week, and I was in the most pain in my life because it essentially just made it super, super bad. It gave my body what it needed to just send all the signals to my skin to flare up. They were like, well, why didn’t that work? Obviously, this is something you’re messing up on. So, you should take a certain medicine. And I was really struggling in school as well. And I don’t know. It was like very, couldn’t talk to anyone about it without them being just like, “Why don’t you just man up?” Or, “It’s just acne,” whatever. ‘Cause I think that’s a thing that I experienced in the South too is a very macho attitude towards it.

I went through that for like two and a half years, and then I moved to Minnesota. And I went to a doctor, and she was like, oh, this is just, this is an autoimmune thing. And so, we could give you Humira for it. And that started to work very well. So, it was like once people could see past surface thing of it being a skin thing, they saw it was an autoimmune thing, and I got that help in that way. But it was a lot of blaming me for a lot of stuff that was going on. And I mean, that continues and has continued to this day. Almost every single appointment I go to, they’re like, “Well, you should try.”

‘Cause what I have is Hidradenitis Suppurativa. It’s an immune disease for the skin. So, it’s very, they say you should take a very specific diet that’s like no milk, no beans, no potatoes, no meat, or anything, or no fish. And it’s like essentially you can eat like four vegetables in an ideal world. And so, I went on a vegetarian-kind of vegan diet for like a year and saw no results at all. ‘Cause I just got super tired of them saying I should do it. And I ended up going back, and they’re like, oh, you did that. And I was like yeah, it did not help anything. So, I don’t understand! A lot of times, it was actually worse. It was a weird thing for them to look at me and be like, how are you not better after you did all that stuff that’s supposed to make you better? And then after doing my own research on it and diving deeper and going to more blogs and resources of people who actually had the disease and not the doctors, they were like, yeah, this is like it doesn’t really help that much. But the only thing that really does help is taking Remicade, which I do now. Yeah, so kind of a lot of blaming and yeah, misdiagnosing, and different kind of blame systems they use has affected the way I think about it a lot as well as I think….

In my work, I mean, I’m a printmaker, so it’s a very labor intensive practice. The work that I do is very, takes a long time, but it’s kind of awesome because it is separated into one day I could spend like 30 minutes tearing the paper. One day I could spend an hour cutting letters. So, it’s like I can pace myself very well, which doesn’t happen a lot in other media like sculpture or something. But I also kind of, the labor of having a chronic illness and the labor is also having to not combat doctors, but that uphill battle with them has kind of internalized itself, I think, in the work that I make.

CHRIS: I’m wondering about the journey that you just told us, when does art start taking a role in the way you make sense of all this stuff?

BENJAMIN: The first print I ever made was when I was 15, and it was like a self-portrait. It was a picture of my face, and I have cracks on it and stuff. And it was like, I think was titled like Broken Vessel or something. And I was like, it was a very internal battle for me of how to deal with this illness that was right on my face and on my skin and my chest and everything. And that was like when I found printmaking. So, there was like a dual battle with it. Art has always, for me, been a very expressive thing and I use it too, I mean, obviously communicate my message about illness now, but for a while, I didn’t know what I wanted to do with art. And so, it took me, this body of work is very recent, and I think my relationship to the work is very different and very recent now. Since I’ve been doing for making since I was 15 years old, I have also been learning about my body since, for those seven years. Honestly, I think it took me up until last year to even realize that there was a relationship between them. For me, it’s not even just about the outward expression that I have in my work, but it’s also about the process and about the relationship I have with the work.

I make prints because when you’re making an etching, you’re carving directly into the copper and scarring the surface, and you can change the surface. So, you can make a series of prints that are not all the same, and they all have some element of change to them. It’s also a very loving process. You take care of the copper while you’re also etching into it. You keep it up. And the print that I read from the beginning of this was run through the press seven different times, and I cut out every single letter. So, it’s super labor intensive, but there’s a care to that, that I have to take. And so, I don’t know, I think very symmetrically between the objects that I’m creating and myself. And I think that every time I make a new print, I gain something from that in a way to think about my body differently.

There’s a lot of philosophical things about printmaking that I really love. I can make a bunch of prints just from one plate, and I think I love that idea of dispersing your physical object in the world for people to experience. I don’t know. I think it’s like a print is such a physical object, and I very much believe in the kind of physical: holding a print or holding a piece paper is very a great experience for me. And I wanna kind of bring that to other people as much as I can, so.

[mellow music break]

JILL: I’m also looking at your website. And this is something else that drew us to you, is your writing as well. Can you talk a bit about that? And if you consider that as an art, as a supplement. How do you perceive your writing as part of your process?

BENJAMIN: For a long time, I’d been wanting to be a writer. I went to this high school, and I had a lot of friends that were poets. And I thought they were the coolest people ever. And I was like, I wish I wasn’t a visual artist. I wish I was a writer. And then throughout college, I got really good at academic writing, and I just read a lot. I don’t know. And I kind of fell in love with words. And it’s funny looking at my work now, because I used to only draw figuratively, and I loved the figure. And now I only use words. And I think 17-year-old me would freak out if he saw that I was using words all the time. But yeah, now I think the writing is as much the work as the printmaking is.

And right now because of COVID, I don’t have access to the regular print studio that I use. I’m a resident at Highpoint Center for Printmaking in Minneapolis right now, and so I’ve been really focusing on the writing. But my first-ever poetry class was last, this time last year was when I was finishing it. But the teacher was Roy Guzmán. And they just published a book today actually that I’m very excited to read. But that class was one of those important classes I’ve ever taken because they showed me really what words could do. And I’ve also really fell in love with the idea of words as something that can have an actual material result. Like, the way you talk about something affects the way that it could be. I think it’s a very beautiful and optimistic idea: the way that I talk about my illness can change the way that I think about it, as well as other people.

So, I don’t know. I think recently even, the writing’s become more important to me as it’s a way that, like I’m interested in maybe publishing a chapbook or something, and that could be dispersed even more easily than a printmaking object could. I could just send people PDFs of it, and it could be super accessible.

JILL: Well, it goes back to your conversation about stories and origins influencing people’s understandings.

BENJAMIN: Totally. And I think in poetry and writing in general, it’s like there’s such an emphasis of the beauty of the everyday. And I think maybe writing has such a good opportunity to show people how common this is or how constant it is instead of just a one-time thing that ends, and then you’re done, you know. The reality is that it’s always ongoing, and it’s always there. So, you’re always in the mode of addressing it.

[mellow music break]

CHRIS: I wonder if I could read another one of your prints and see if we can’t talk about it a bit. And again, it’s multiple lines with multiple letters and impressions of letters and layers of letters. And it says, “A friend asks, ‘will you get better soon?’ Like a demand or a plea as if healing is as simple as begging.” There’s a lot in your work about this conversation between disability and non-disability, and I really like that. And I wonder if you wouldn’t mind talking a bit about that print.

BENJAMIN: Totally, yeah. That print is part of the same series from the one that I read from in the beginning. Yeah, there’s so much of, I think, a conflict that I have in my own life and communicating about my illness where I always feel more comfortable talking about it to people who aren’t close to me in a weird way. Because it’s, I don’t know, for some reason for me, when I’m closer to somebody, it’s hard for me to express fully how complicated it could be. I go to the hospital every month for medication. And every time I go, someone will text me and be like, “Oh, do you want to go hang out later,” or something. And I’m like, “Oh. Well, I just got back from the hospital. I think I’m gonna rest for the day.” They’re like, “Oh my gosh.” And they, everyone knows that I go to the hospital, but they’re like, “Are you OK?” Or like, “Will you get, is it done now? Will you get better?” It’s still such a hard thing for people to communicate. And I think it comes from a place of care and people looking out for you.

But it’s also, I think, so deeply rooted in normative ideas of what healing is. Because healing, much like language and much like everything that I’m really thinking about, is a process and something that is always changing. It’s hard for, I think, people to wrap their head around that because it’s always a place misunderstanding that’s not really, it’s not malicious. They’re not trying to be like, oh, just get better. But it’s like, I don’t know. It’s complicated terrain to wrap around. And I think the idea of healing being as simple as begging is there’s a power relationship that’s kind of always in the undertones of healing where the presumption is that if you are in the process of healing, you’re going on an upward slope. But I think that I’ve been on the weirdest kind of graph of going up and down, up and down for seven years. And the word “begging” brings out that power relationship between what people think about when they think of healing. ‘Cause that’s, I think that’s also a fiction, is healing isn’t a weak thing. It’s not going from weak to strong or anything like that. It’s so much more nuanced, and there’s so many more things to it.

JILL: You’re referencing internalized ableism.

BENJAMIN: Yeah, totally.

JILL: I’m curious when you became familiar with that word.

BENJAMIN: Yeah. Probably when I first or maybe the second or third year of going to art school and reading more critical texts that we’re examining the social structures of disability, that’s around the first night I heard it or got familiar with it. And that’s really when that work started changing as well because I started knowing or recognizing a lot of traits like that in myself and questioning how I could change that. And I think that’s also another thing about growing up in the South is that there is still such an internalized ableism that is prominent in the South.

I go there every probably Christmas, sometimes every summer as well but to see my family. And when I’m there, I go to the hospital that they have to get my medicine. And the last time I was there, there was a woman. She was like, “Oh, what are you in here for?” I was like, “I’m getting my Remi—” ‘Cause she saw how young I was. And she was, I guess, wondering why a young boy was in there. I was describing that I’ve had this thing for seven years. I take medicine for it. It’s an autoimmune disease. And she was just totally shocked. And she was like, You’re living. You’re only 22. You’re in your best years ever, and you’re dealing with that?” She was like, “I’m only in here to get some iron in my blood.” And she was like, “Oh, you’re such a strong young man. I don’t understand why you’re here.” And I like, I don’t know. There’s so much there that’s just like it was very normative gender politics, and it was very, it was a very Southern thing for her to be like, oh, man. This strong boy is sick. I don’t know how that could happen. But that is a real issue. Because I think that’s probably why I went to so many doctors, and they were like, this teen boy can’t possibly have any issue like this.

I don’t know. That’s something that I also conflict around in my work, as well as I think it’s very prominent in the school setting. And so, I think a lot of the work started addressing it after I got out of school because I was like, it’s hard to address that in school. Because you could talk about it in a critique, and your peers would just be like, “Oh, why? Why didn’t you finish something?” And they don’t understand that you couldn’t or had to rest or, you know. And I have a lot of friends that are in school right now during this, who had a drop a lotta classes because they can’t take the workload, and they can’t, just their situation can’t facilitate the things that are happening right now. And their classmates are teasing them or ragging on them or assuming that they’re working less when it’s totally true. 

JILL: I’m also curious when you first considered yourself a disabled person.

BENJAMIN: Probably specifically summer of 2018, I think, because I read, I forget who the author was, but it was an essay titled Chronic Illness as Disability. It was talking about the Social Model of Disability as like the— And I talk about this a lot in my writing and my whenever I talk to people in general. But it’s not really like, the work that I’m making doesn’t really stem from me only talking about what’s happening to my body. But it’s the precarity that I’m experiencing in everyday life is stemming from a systemic and cultural understanding of illness. And so, the Social Model of Disability as something that argues that the idea of disability comes from the societal place that you’re in and the way that your body is being responded to. The fact that these bodies and these people aren’t accommodated for in the normative, very productivity-driven capitalist society, I think is really when I started to think about it like that.

JILL: Yeah, I’m asking these questions specifically because we know that there’s people listening who aren’t where you are in their personal growth. And we’ve heard people who don’t always know where to look for community or role models and power within their own lived experience of disability. And so, I just, I’m taking advantage of you as a—and I hope it’s OK—as a role model for people, someone who might be listening and paying attention. Because it’s like we’re trying to bring in and invite more people into the disability community and understanding that it’s a place where you can feel freedom and empowerment.

BENJAMIN: Yeah, I think that’s an amazing and wonderful idea.

Something too that I didn’t touch on when I was talking about my growing up and where I am now and the way I think about my body is that really, a lot of the ways I think now and maybe the positivity or the relationship that I have with my own health has really been brought on by I grew up as a weird kid who loved punk music and loved a lotta really weird stuff. And so, those lyrics and very emotional and vulnerable loud rock music has seriously, it’s been one of the most important things for me in my life. And there’s a song by this band called Wingnut Dishwashers Union that I really like to reference a lot, because I heard it for the first time when I was like 13 years old. And the lyric is, “A punk rock song won’t ever change the world. But I could tell you about a couple that changed me.” And it’s just like that idea of what I’m doing right now is obviously not gonna go to like the CDC, and they’re gonna be examining this critically. But it could change the way three people think about their bodies and what is happening. And that kind of small change is so important to me. It’s important for people to find community and solace in very little things like that.

[mellow music break]

CHRIS: What other art forms or what other art is important to you and has been important in your formation as an artist?

BENJAMIN: Definitely the music that I was talking about as well as a lot of academic writing, which I still consider very, very artistic. There’s one book called Touching Feeling that was published by Eve Kosofsky Sedgwick. That’s when I first encountered the idea of language being something that is performative and that can enact real change. Yeah, it’s kinda nerdy, but I love academic stuff like that, as well as poetry.

This book goes was the first book of poetry that I ever bought. It’s called Not Here by Hieu Minh Nguyen. And it’s the most amazing poetry I’ve ever read in my life. And I think that once I came into contact with these words, I kind of really felt like what I could do with poetry and thinking about lived experience as being important. Because I think I lived for a very long time with people just kind of telling me that it’s a very shameful thing to experience, right? They told me, especially in the South, like we’re going into my great aunt’s house the winter after I kind of started to show symptoms. And she was like, [whispers] “Oh, no! Like this is the worst thing I’ve ever seen in my life!” Like, why is this kid like this? And so, yeah, taking agency over your experience.

I think music is also just a very therapeutic thing for me, and I really love the different kinds of sounds. I mean, I’m from the South, and I really like country music, but like weird old Americana music that’s very lyrical and romantic. There’s a lot of stories there that I think are very nuanced and complicated, that are very human. And besides that, a lot of just visual art I’m very interested in.

CHRIS: Have you read Susan Sontag?

BENJAMIN: Yeah. I had a one professor in my undergraduate program who saw that I was interested in these things when I first started, and she just started by giving me a bunch of readings. And that was one of the first ones that was super informative to me.

CHRIS: Yeah, I think Illness as Metaphor and AIDS as Metaphor was a way for me to open up even my own understanding of my own body. I’m a guy in a wheelchair, and I have muscular dystrophy. And there was a way in reading those books that, yeah, just really connected to what I see in your work. It’s cool to see that because people don’t understand disability in a sort of one-to-one way. It’s always relational. It’s always association, right? It’s always impression. And so, in her book and then in your work, this idea of we always lean on metaphorical thinking. But the damage of that for the person who is being talked about, right? I mean, that to me was a true lesson in the destructive and regenerative power of words, right, and language.

BENJAMIN: Mmhmm.

CHRIS: So, yeah. That’s interesting.

You know, DisArt is interested in the disabled culture and disabled culture movement. Do you have a connection to that community, and do you feel connected to that community?

BENJAMIN: Yeah, totally. I’m surprised I didn’t even touched on this earlier, but my job is that I work at a day program. I’m a DSP for adults with developmental disabilities, as well as I do arts programing with them. I’m very new to that as well. I started in September. And that’s been put on pause now as well, obviously, because of COVID. But really, what I do there is I just facilitate art making for anyone in any way that they need it. And I also assist them with any daily cares they need assistance with. And I think that that is a very direct relationship that I have.

I just, recently, I had a residency at Spudnik Press in Chicago, and they helped me out with a workshop that I did with Project Onward, which is a nonprofit in Chicago. And so, a bunch people from that program came, and we did a bunch of collaborative prints together. What I’ve been really focusing on recently is how do I use my skill set as an artist and as a printmaker to facilitate art making for people who may not have the resources? And really, just trying to assist in any way I can. Because that goes back to my ethos of thinking about artmaking as a way to communicate more broadly and really get these stories and expression out for people.

And it’s important for me as well to think about for so many people with disabilities, art isn’t just a fun thing to do. It’s a vital mode of expressive communication that is the way they communicate to people, the way that they get their voice out. So, it’s super important for me to help those people and be there the way that I can.

I love reading books and also blogs and stuff about the disability community and ways that we’re changing and adapting. I think recently, I read the book Care Work by Leah Lakshmi. And that book has been very, very important to me. It’s brought on so many different ideas that I wasn’t even thinking about for a long time. And one thing that they bring up in the book is like this idea of caregiving has, I guess, a non-moral thing, or it’s not an obligation. So, they talk about you shouldn’t only care for people that you like. And I think that’s a super important idea that people don’t even understand. I think for a lot of people, a lot of people who have a lot of ableist ideas, care is something that you perform for somebody that you love, and that is the only really relationship people have with care. Whereas I think you could think someone is super annoying, and you can still care for them. And you can still assist them with what they want because it’s just important, and it’s human to do that.

My friend, Hannah, is an artist here in Minneapolis, and they are a baker now. And they love baking and stuff, and they have shown me a lot of real, real, amazing blogs and things about disability that’ve been super important to me. They’re one of the first people I talked about as well at school, about the idea of chronic illness as disability and what that means for us.

[mellow music break]

JILL: If we think about care in the general population now and thinking bigger in reference to the COVID-19 pandemic, what are you seeing? What are positive? What are negative? What is angering you? I mean, whatever. I mean, your reaction. It could be in reference to care or whatever way you wanna take it. But care made me think about care for the stranger, I guess, is what I’m thinking about when you were talking.

BENJAMIN: Mmhmm. I have a few thoughts about this. On one hand, I think it’s a lot of the people that I’ve been seeing protesting the stay-at-home orders and wanting it to end and wanting to reopen the economy, I think really do not care for anyone who is differently-abled or in a different economic situation or anything than them. I think they’re very really only thinking for themself. And I think that for a lot of people who are ignoring these issues of how COVID impacts the disability community, I think they’re really stuck in a mind state that is of the idea of like, oh. Well, it’s not affecting me, so it’s not even real. But they’re ignoring all these vast communities across the country and across the world. So, that’s a negative for sure that I see with the coronavirus pandemic.

But also at my job, we just started doing virtual programing. And I know Arts of Life in Chicago has been doing a lot of virtual programing. I think that’s a very, a huge positive, because I think that has the potential to be lifechanging for so many people, especially maybe in more rural communities. I think of the people that I know in South Carolina who don’t have access to day centers or things like that where they can go and get assistance with artmaking. I think it’s incredible that the virtual has become a reality for most people, whereas the virtual was a reality for a long time for a lot of folks. And now it’s kind of being brought into the mainstream. And I think it’s showing, I hope that it will show that the idea of independence that has been is a very sort of abled utopia: the idea that everyone should do everything by themselves forever and never receive any assistance. I hope that people will realize that that’s pretty false.

I think that interdependency is one of the most important things to the world. I think it’s what we see in positive relationships to the environment, we see interdependency. I think we see interdependency in positive relationships between others. And it’s, I hope people will realize that that’s a very important trait and something to really love and care for instead of focusing on trying to be the sole individual. Yeah.

Another thing about my work is that I think the reason why I gravitate towards printmaking is because it’s a very democratic medium where you can get stuff out. And I love the idea of multiplicity as far as like multiple people affecting other people, and people, I don’t know, the affect of interdependency and whatnot is so much more attractive to me than the idea of everyone just being alone.

CHRIS: Are there other things that you’ve seen during COVID-19 about disability that you wanna make sure we talk about? Or anything that you’d like us to all talk about together about that?

BENJAMIN: This is something that’s more complicated because I don’t have a answer to it. It’s just kind of like a frustrating observation or issue that has been going on. But a lot of the people that I work with in my day-to-day job, I’m working with them from like 7:30 in the morning to 4:00, and then they go back home, whether that be to family or to a home staff or something. A lot of them are very underserved right now. And so, there’s a huge conflict that I have and I have had since the day I was told to stay home when this first started happening was, how do you grapple with not being able to be there for somebody while also it’s the safest choice to not be there for somebody? But there’s also such a dangerous line because it’s frustrating to see people be underserved or not being given access to things they want. For instance, at my job, I know that there’s clients that we work with whose house staff are not cooperating with them as far as programing they want to do. And so, it’s to the point where they will not let us program with them because it’s just a very frustrating thing.

And also, it’s interesting, the way, I don’t know, I think about touch, and I think about contact and how important that was to me and my practice as a caregiver, as an artist too. And now it’s like the idea of touch is gone for the near future. Or I don’t know. It’s a very confusing and hard thing to wrap my head around because, yeah, the work that I do is so much, is so based around kind of the ease of transition between, let me help you make this screen print and also, let’s go nonchalantly use the bathroom real quick so we can get right back to it without things being muddied or complicated, I guess. And so, it’s hard to, I don’t know. It’s very strange. And I know I’m speaking for the kind of what’s happening in Minnesota right now. But it’s just so frustrating to know that there’s so many people in group homes whose caregiver is the state, who they’re not getting the proper care they need, and they’re not getting the proper facilities. And there’s not much you can do about it because of the situation. [mellow music plays through the next few sentences] So, it’s very, very hard to maneuver.

JILL: Yeah, it’s heavy to think about. And we appreciate you being so willing to talk with us, and we appreciate your time.

BENJAMIN: Yeah. Well, thank you for having me. I had a good time talking.

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: “Miss You” by Podington Bear. (Source: FreeMusicArchive.org. Licensed under a Attribution-NonCommercial 3.0 International License.)