Ezra
Benus
Brooklyn, NY
“I think all it does is more so create these divisions for people to have then felt like they’re safer. Which is a misconception, right? It’s an able-bodied myth that people are in some sense “more fit” or “more able-bodied” even.”
Ryan Roach: What is your name and how do you identify?
Ezra Benus: My name is Ezra Benus and I identify as a Jewish, queer, white person who is sick and disabled. I’m an artist, an educator, and a curator. I’m also a parent to a dog.
RR: What has your experience been like during the pandemic?
EB: The word I always use is “intense.” I’ve not felt any space or moment to feel, like, real rest. And this is something that was also true kind of before the pandemic, but I would say things have been really heightened, especially early on. Part of how I first really experienced it was I had to go into Manhattan. I live in Brooklyn, and I had to go into Manhattan to get my infusion at the hospital, and I go every six weeks. But I remember, in the early parts of the quarantine, how anxiety-provoking it was to even think about something that I even took for granted, which was that I was able to go on my own to get my infusions. But now I couldn’t take the subway, and I didn’t have any N9550 masks. And I was going to be entering into a hospital in midtown Manhattan, which was just a couple blocks away from one of the hospitals where they were treating COVID patients.
So, I just remember, like, not sleeping at all and trying to figure out how I’m even going to be able to afford to keep going to get my infusions. Thinking about costs, like, “Can I take Ubers?” It’s like 60 bucks each way because it’s New York City, and this would be something that happens every six weeks. Also, the anxiety of being in a hospital during that time, and, like, actually getting immunosuppressed even more. Fully being like, “Come suppress my immune system during a pandemic,” made me really on edge. I think as it’s just been something that’s been for a bunch of months, I’ve felt waves of feeling comfortable doing it and discomfort.
New York is sort of “reopened,” so it was as if it was a Manhattan that I had not seen in a bunch of months. And I’ve been going the last few months to get my infusions, so it started off as, like, a ghost town, which is really creepy. My hospital is right near Grand Central Station and – I don’t know if you’re familiar with New York City at all, and I grew up here – but I’ve never seen that area empty, and it was empty. So that was one aspect of being like, the home that I’ve known my whole life is not the same. And I’m trying to get my infusion, etcetera.
And then to delay this infusion, which I’ve sort of gotten accustomed to being isolated and really local, within a few blocks of my home, to then seeing so many people out and about kind of living “normal” life – it’s just been jarring. That’s sort of the intensity that I’m talking about: is the ways I’ve been trying to normalize the experience, the heightened anxieties around navigating the experience of living in a pandemic. But pretty much it keeps shifting, and that’s the really intense part, you know, the constant shifting of the reality of being a sick person in this time.
Because I’ve always been sick, since I was a kid. I’ve always been chronically ill, immune compromised. So thinking about things like hygiene or how to coordinate to get enough medication and how to coordinate to get food and care – all these things I was already used to. Having to even stay inside for a long period, I was used to that. That wasn’t the new thing – it was more just, like, not understanding or experiencing the outside world, but then having these glimpses that were always so different each time. There’s no way for me to really understand it as, like, one moment, which makes sense – this is an ever-shifting experience, and that’s what illness is. And that is something that I think about a lot. I also am seeing that people are trying to push against that way of thinking about the world and existing in a body, and in bodies and in communities – that people don’t want to shift, right? There’s this real tension. And I’m like, “You have to shift. That’s what it means to be living in illness.” Things are flexible, things have to be flexible. So anyway, that’s what it’s been like. [Laughs]. Lots of shifts that are hard to internalize. And that’s been intense.
RR: What has your experience been like coping during the pandemic?
EB: Oh, terribly. A lot of attention to my dog, which I got on February 22, two weeks before the pandemic, before it hit New York with the shelter in place and everything. So that’s been my focus, and I think I put all my energy and caring and time into this new life. He’s from a shelter, and he’s also actually a disabled dog – he has one eye – and a lot of parasites. So it’s been a lot of tending to that. And I’ve found that helps me focus on one thing. So that’s how I’ve been coping. I smoke so much weed. That’s not really different than before, but I think it’s, like, playing out a little differently. I feel like I’ve been smoking more because, at some points, my pain was really high because of anxiety, and depression, and just everything. And then it kind of just became: I’d start my day, smoke a joint, smoke another joint. I feel like that’s been good, but also has been getting a little old. That’s how I’ve been coping truly. And I just started therapy again just this past week, because I need to.
RR: I know you mentioned before that you do need to go to clinics and obviously there is medication that you need to get. Going off that, do you have accommodations or supports or health needs that have been impacted by the pandemic?
EB: I mean, the main thing – a lot of the medication I take, I get through the mail. I order a three-month supply in the mail, so that’s fine. But it’s more been the infusions that I have to go into a hospital for every six weeks. That’s been the thing that’s been most impacted. It’s now taken into account so many other people’s schedules for me to be able to do it, whereas before I had more capacity to navigate all that by myself. But trying to find rides, trying to find rides with people who I would feel okay with being in a car with for 45 minutes each way, being in a hospital, and having to get access to an n95 or kn95 masks for when I’m in the hospital. In the beginning I couldn’t get any of those.
And then I was like, “I’m going to be entering into a hospital without protection that made me feel safer.” So now, because New York is a little more used to it, and I’m more in a routine now with all of that, it’s been a little easier. But in the beginning it was the thing that was most impacted. I mean, I was not even sure that I was going to be able to go into the hospital to get my infusion. I had to get the O.K. from my doctors to be like, “It’s safe for patients to come get their treatments.” On the other hand, I also need the treatments or I will become even more sick. That’s the thing that’s been impacted the most – all the coordinating on that. Having to spend more money, quite frankly, on all of that.
RR: What was it like in the beginning of the pandemic when it was a bit unclear about if you were going to be allowed to go to the hospital and get your treatment or if you were going to need extra approval from your doctors - how did that all make you feel?
EB: Super anxious. It was also too early so that doctors didn’t even really understand how to best protect someone. Basically, the main things my doctors were saying was that, “We still don’t know how it’s going to affect someone” with my specific conditions. So even, like, not knowing what the potential risk is, the double or triple or compounded risk let’s say, of how it might affect me, that kind of unknown was really hard. I feel like part of me was like, “It’s okay if I get sick, because it’s like, whatever, I’ve been sick,” you know? It’s another thing when there weren’t enough specifics about how it would potentially interact with my conditions, so that was really hard. And then also it was just hearing from my doctor too that she was scared, which was not a great thing to hear, you know? Someone that, by all means, knows a lot more – she was doing research basically. She was part of a research team at my hospital that was looking into potential treatments, so she was on whatever global committees – was having the latest correspondence – and even she was unsure. So that was just really difficult, to be able to feel okay about leaving – about putting myself in a space, in a hospital space, which is already not a great time. So it was just really difficult.
And then, something that happened after my first infusion – it was just a really, really intense experience that I want to share. Which is that, I got my infusion, and all of the anxiety surrounding it made it there. And one of my roommates had a car at the time and was able to pick me up. So, they pick me up and just like, three blocks away from there is a hospital where, like I said, they were treating COVID patients. And this is in March. So we get on the highway, and you can see the back of the hospital from the highway, so literally leaving the hospital, within two minutes of getting on the highway. And then, as we’re driving, I just see like 20 freezer trucks, where they were keeping bodies of people who died of COVID. Literally all within a span of, I don’t know, five minutes of me getting a treatment in a hospital and feeling kind of out of it because of that – and already trying to deal with the anxieties for that, of what it means to go and get infusion in a pandemic – to then seeing that. Again, in March we were the hotspot. New York City was the hotspot. And I’d never seen anything like that. And it just triggered a lot of feelings that I’ve experienced or trauma that I’ve had from being in hospitals and having near death experiences. So that really fucked with me in a big way. I also think it was early enough so that people were not understanding the tangible parts of it. It’s like, if you didn’t know someone, it’s like, “Oh, it’s not so bad.” Seeing 20 massive freezer trucks that are presumably filled with bodies was not fun to see. It was extremely, deeply saddening. Because I never want anyone to be in a hospital. I can imagine in some ways what it must have been like to, you know, be terrified. Potentially people’s first time being hospitalized for this, and that whole trauma is something I don’t want anyone to experience ever. But it just reminded me of that feeling, you know, and forgetting how normalized it is for me.
RR: What has your experience been like accessing information about COVID-19 and the pandemic?
EB: The only thing that I was trusting and reading – I had to kind of stop reading the news, stop reading The New York Times or whatever – I was getting daily updates, and it’s still occurring weekly, from local politicians. From a state senator in Brooklyn and a state senator who represents the Bronx district. And they just had very accurate and very digestible and legible ways of sharing information and numbers and statistics and resources. So it was very clearly laid out: This is what’s happening, these are your nearest testing sites, this is where we are in XYZ phase, this is the legislation that is being put through, this is where you can access PPE, this is where you can access food. It was super clear. So that was the sort of main place I was receiving kind of what I understood as accurate information. And it wasn’t national, it was New York: New York State and New York City. And then, thinking more about what was happening outside of New York space, was just Instagram and from friends who are in other places, and passing along people’s Venmo’s who needed assistance. Literally just knowing from person to person information, as opposed to news. So that’s sort of how I was accessing stuff.
RR: During the pandemic, the government and media have deemed the chronically ill, disabled, and immunocompromised communities as “vulnerable.” What are your thoughts on the terminology of “vulnerable”?
EB: Yeah, vulnerable. I think it’s so ridiculous because what we’re seeing is that everyone’s vulnerable. Like, who isn’t vulnerable? Everyone has a body. I think all it does is more so create these divisions for people to have then felt like they’re safer. Which is a misconception, right? It’s an able-bodied myth that people are in some sense “more fit” or “more able-bodied” even. There’s no such thing. That’s a lot of construction. So it’s pretty divisive in my view. It also does a big disservice to everyone in the world and every population. The other terminology that I have been really fascinated by is this “high-risk” or “low-risk,” and it’s also so – it makes me think about who even gets to have risk, right? Like, what does that really mean? You were saying technically, or theoretically you’re “vulnerable” or “high-risk,” but you are assessing your situation and doing a cross-country photography project. But you get to decide your own risk, as opposed to being labeled “high-risk” or something.
It brings up the questions of who gets to claim who is vulnerable, who gets to claim who is at-risk, when all of that is actually made up. And I’m not saying being someone who is disabled or being someone who is an older adult or who has underlying conditions, sure that might make people susceptible. But the whole thing with this virus is that it doesn’t spare anyone. Everyone is vulnerable. So to say some people are “vulnerable,” the implication is that there are people who are not vulnerable, and I think that’s such a toxic way of approaching illness. Because then, when you think about how care is being provided, and there’s an entitlement to people thinking that they deserve care if they’ve never been into a hospital. Whereas people who are “vulnerable” have already been denied care for so long or access to care. So it’s all just a linguistic farce, and that is something that I’ve been thinking about for sure. It feels super impersonal. Like, I’m personally not offended, because I’m like, “You don’t even know –” whoever is saying these things doesn’t actually know my lived condition. I happen to live in an apartment with roommates who are also being safe and concerned.
So my risk, I’m not really at high-risk or that vulnerable – it’s more about conditions and access to safety and care that creates vulnerability and risk. It’s not about a physical thing that’s happening to an individual body. Imagine if our nursing homes and psychiatric wards and prisons, one, didn’t exist, but two, were in some ways more liveable. I know this is all slippery terminology because I know that any sort of space that denies people their own capacity to their own agendas of care – you know, their own ways of wanting to care and be cared for – is extremely disastrous. But also, there are reasons why nursing homes and psych facilities
and prisons, the ICE detention centers – all these places were rampant with COVID, and it was so spread because the care attendants are not being paid enough, so they’re not going to do as good of a job. And that also means there probably aren’t enough PPE for these people. Again, it’s about conditions. There’s no reason they should necessarily be at more risk. It’s the conditions of allotment of funds, and care, and attention to these things that create these vulnerable or high-risk populations. So that’s what I think [laughs] about a lot.
RR: Over the past few months, media correspondents and politicians have continuously talked about “vulnerable” populations, yet rarely invite anyone from these communities to represent themselves or their communities. Why do you think that is?
EB: Because the whole thing is about power, right? And that’s what I was talking about before. It’s who gets to decide who is vulnerable and who is at high risk. It’s the people who decide and maintain and create conditions and structures for them to enforce people to be “vulnerable” or “high risk.” It’s someone who is not ever having to consider themselves in any position that they might need care, or to be cared for, or access to care. Of course they’re going to consider that it’s someone outside of themselves. That’s always the case in everything, in any policy. It’s just – leadership is just not representative of the people who are most affected. It’s the same way that the whole recent eviction moratorium – the people who are making the policy around this are not people who are at risk to be evicted. So they’re like, “Cool, we’ll have this for four months, and it ends on July 2651.” But they’re not thinking about themselves, right? Because it’s so abstract. When things are so abstract, these people are just going to be more and more abusive.
And this is part of the reason we want leadership to be reflective of communities that they serve. Whether we’re talking about in cultural organizations, or in politics, we need sick and disabled and queer and Black and brown and Indigineous – we need all these people in leadership positions because we and they all know about what we need, as opposed to people making decisions based on things they don’t know. It’s just classic. This is what it is and has always been. It’s the same reason that the whole time during the AIDS pandemic when it was coming up, it wasn’t about the actual virus itself, it was about the “silence equals death” slogan. And part of thinking about that, it was the silence of people in power that caused death. It’s not the virus. If there was access to testing and care – that’s what we’re seeing right now. It’s not new. None of this is new. Illness is as old as people, as humanity, because they go hand in hand. It’s just about how and who responds to it, you know? And we’re clearly seeing that the people in power obviously do not think that there are lives worthy of living.
And I use that phrase “lives worthy of living” because it all comes from a deeply eugenicist framework of, “Whose lives are worth keeping,” and, “What cost-to-life ratio is acceptable or works right?” This terminology “life worth living” is taken from how the Nazis considered sick and disabled people. That’s why they did experiments and killed sick and disabled people first. Because who was going to stop them, when it came to that, right? That was the whole thing: You pick on the most vulnerable because their lives are not worth living as power considers. And that’s something that we’re seeing today. And I don’t bring that kind of, you know, connection lightly. That’s a big thing. It’s deeply troubling because what we’re seeing is a myth of white supremacy, which is so entangled with ableism – of whose bodies and what kind of behavior and what kind of lives are considered to be “normal” and valuable. And if they’re not, that’s going to trickle down into everything, from policies, politicians talking about “the other,” and it also will boil down to the hospitals, of how doctors are deciding who and what are deserving of treatment. And it’s dangerous and it’s troubling and it has precedence. The language, the way we’re seeing all this play out, it’s not new.
RR: During the pandemic, society has been able to accommodate the general public with accommodations, like work from home, that have been asked for previously by the disabled, chronically ill, immunocompromised, and neurodiverse communities, yet these communities were typically denied. Why do you think society has been able to accommodate the general public when these accommodations when they have been denied previously?
EB: The answer is because they’ve always had capacity to, right? It’s not like all of a sudden the stuff that you’re saying we’ve been asking for for a while and have been denied, the knowledge and the asks were always there. So what we’re seeing now, all it is is proof that anytime someone asked for this and was denied it was because, again, sick and disabled lives were just not considered worthy. But now that illness is affecting people who were, like, “able-bodied” or “nondisabled” or “not sick people,” when it affects them, that’s when they want to affect change. And it’s deeply infuriating. It’s really troubling because part of me is thinking, like, when there is more of a handle on the situation, are all these things going to go away? Or will it continue and then our culture is then gonna shift into thinking about accommodating as a normal thing, which it should be. We’re seeing this as something that’s new, but it’s not new. Sick and disabled people have been learning and being and teaching with each other through the internet for a while already. We’ve been able to do that: We’ve been able to share resources and ship food and deliver each other food and groceries – all these things before. It’s just that we’ve been doing it ourselves.
There’s never been a reason, besides for discrimination, that we haven’t been able to access these things earlier than during a pandemic. I think for those of us who experience illness and disability all the time, we’ve always known that these are necessary. It’s just that now everyone else is experiencing illness and disablement. There is a large disablement happening to large swaths of the world, and I think people get irritated when they all of a sudden have a barrier to access to something that they took for granted, and then they’re like, “Oh, I’m going to complain about this, but something has to be done.” They just never listened before to us. That’s what this is.
RR: Moving forward, how would you like to see the government and society start responding to the COVID-19 pandemic?
EB: I mean, in an ideal situation, we wouldn’t be relying on the government for any of this. I mean, it is the government itself – the structures of the government itself – that prevents so much access to care and access to lives that we can be happy and proud of living. The government has not been a resource for major relief for sick and disabled people. If anything, the government is part of the reason that so many of us are not able to have access to life. And I mean that in the fullest sense. And I’m not just talking about sick and disabled people, primarily just from my perspective, but it’s so many people. It’s apparent in the ways COVID is really destroying so many Native and Indigienous communities. It’s because the government is the one that forces Indigineous and Native folx into specific areas with lack of care and lack of educational resources and healthcare. It’s just so unbelievable that the government is also seen as the saving factor when it’s part of the problem. So that’s the ideal world that is, what is called the “United States government,” just isn’t functioning in this way. But in a more realistic way, I think it’s about expanding the ways – you know, like money was being sent to so many people. Just being able to get by, to pay some rent, maybe have some food. That should be a guaranteed thing for people, regardless of employment.
It should be that everyone can access the care that they need whenever they want. So, expanding the ways people can access care, you know, maybe not limiting disability like SSDI and SSI53 to such a low number that it’s actually impossible for disabled people to maneuver and navigate any kind of mobility. Again, all the terminology is so problematic, like “upward mobility,” or “climbing the ladder” – all these ableist notions of moving up in society, like these are the things that are keeping us sick and disabled. If we really consider thinking about illness and disability and, you know – all these things are constructed. And I’m not saying my conditions or specific illnesses don’t impact me. Like, of course. But I’ve not shared yet one specific thing about my conditions with you, right? But we’re still able to have this lengthy conversation around the ways society is the issue here, or policy is the issue, because it’s structural, it’s not individual. And so I think a change in government and policies is a real way for there to be a shift of a culture, a shift to a culture of care. There’s more funds available for community-based decision-making and leadership, and that kind of trust that we know we need. And we know how to use funds and resources better than a dysfunctional government does. So I would say propping that up would be a huge thing – lots of community engagement and leadership without having to necessarily answer to a grant or to a government or whatever, but that there is funding for that.
RR: In addition to the pandemic, the United States has experienced uprisings across the country in response to the murders of George Floyd and Breonna Taylor by police. Uprisings in physical spaces are not always accessible to all folx. Have you been involved at all with the uprisings over the past few months? And, if so, what has that looked like for you?
EB: Yeah, I would say besides individual support that I can provide literally to people I know, it is through the work of communal-based efforts and mutual aid and all of these ways that sick and disabled people and Black communities and Indigineous communities have already been doing. It’s not like this is a new thing. So that’s been the route. I will say it was really difficult to feel like so much was happening that I could not actually participate in, and I don’t think there’s a way around that. It’s more of understanding activism as maybe more complex than just a physical showing up kind of thing. I do believe in activism in even small gestures and small moments. I think, in the ways in this project that you’re doing, this is not out of the realm of the other protests and uprisings that we’ve seen – this is all intertwined. So for me it’s about using whatever kind of platform that I have, and resources that I have, to further something that is much bigger than me. Which is, I believe, the work that I’m doing, and I hope that I can continue doing it. And part of it is being in community. I think that’s the biggest possible form of activism: When so much in our culture is telling us to not know each other, to not be together, and to only focus on ourselves as individuals, I think it’s a big thing to be like, “Actually no, I’m part of something bigger, and I’m in community with other people around this.” Because that’s what power doesn’t want, and that’s what American individualism and ableism tells us that we shouldn’t have or we shouldn’t have access to.
But the more that we can stay connected and build together, I actually think that’s the way of joining any form of uprising, right? So, my brother and I have this work – a phrase that we have and it’s this ongoing work, and it’s, “An army of the sick can’t be defeated.” And that’s something that I truly do believe: Thinking about what it means to come together in a lot of different ways, and the more that we can join together, the more that we’re actually giving trouble to anything that is trying to tear us apart. And that means also you need to sleep today because you’re feeling like complete crap, you can’t get out of bed, you gotta do that. And that’s part of the activism. Why can’t we see that as just as valid as being on the street for 12 hours? If I can’t rest and be available to you my friends, to you my community members, I think very personal acts of care and very interpersonal acts of care is activism as well. So that’s sort of the way that I’ve been approaching trying to be a part of something that I don’t feel like I can be a part of in the physical way.
RR: That was all the questions we had, thank you for sharing. Is there anything else you’d like to say before we wrap up the interview?
EB: I would end again with the phrase, “An army of the sick can’t be defeated.” I mean, I truly believe that. It’s part of why I’m so touched by your project and think it has such power in it. It’s so deep, and you’re connecting, and you’re creating community. And that’s the work, these are the things that are going to make us continue to stay alive. It’s not the government, it’s not the leaders, it’s between us.