On this episode of the Delete Your Account podcast, Roqayah Chamseddine speaks with Arnessa Buljusmic-Kustura, a 27-year-old Muslim, Bosnian-American analyst, community organizer, and single mother, who went viral in 2015 after sharing her family’s experience with the US immigration process for refugees on Twitter. Kustura, who authored Letters From The Diaspora, a powerful collection of stories documenting the way in which Bosnians continue to deal with the aftermath of war, sheds light on the power of one’s identity and how it shapes the way your life, and the lives of those around you, manifests.
This interview is part of Roqayah’s Islam In America series, which amplifies the stories of Muslim-Americans and what they struggle with in their day-to-day lives, beyond just Islamophobia.
Kustura, former executive director of the Bosnian American Association of Iowa, tells us about her struggles as a single, Muslim mother resisting patriarchal sentiment regarding divorce and single-motherhood, and how she is impacted by what she describes as performative expressions of sympathy as she goes through a battle with cancer.
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Partial transcript of the interview:
ARNESSA: I love both of my cultures, but I’m a lot more inclined to being Bosnian because I grew up there. But every once in awhile if I say I’m Bosnian and Turkish, that’s like a double whammy. Then I’m like really a terrorist in their eyes. It’s ridiculous. Just the shift of living here and seeing how all has changed and seeing that people really just don’t like you because of who you are, because of where you come from and what your religion is. It’s something that black people in America have known for a really long time, but I think for us it’s increased a lot more. I think a lot of Muslims are taken aback by the fact.
ROQAYAH: I think a lot of Muslims, especially politically liberal Muslims, thought that under a Democratic president we’d be okay, and everything would be fine. But as people have noticed, things really haven’t changed for the better whatsoever. Yeah, definitely Islamophobia hasn’t gotten better since I was younger. Because I still remember 9/11. I was a kid, but I still remember what happened afterward to my family. And even now it’s just constant.
Who knows what’s going to happen next? But it surely isn’t getting any better. I mean, you heard about what happened in Kansas with the three men, who attempted to bomb a Somali Muslim community, and the way they referred to Muslims as cockroaches. One of the men said something like he didn’t care if they killed babies, as young as one year-old. There is a dramatic increase in the violence that’s being shown against Muslims, and it’s being normalized completely.
ARNESSA: It’s accepted now. When you have politicians that are so openly racist and Islamophobic, it’s really hard for the local population not to accept that Islamophobia. You know, they carry it on. It’s increasing and increasing.
I come from a place, where a big portion of the reason why the war happened, why the genocide happened was because of Islamophobia. For me, I know what happened, and I know how it played out and what hate can lead to. So with this sort of situation that we’re in right now with Islamophobia, I think it’s always for me, it’s always like a fear what happened in the Balkans could happen here. And that’s really scary to think about. It doesn’t take that much for hate to transform into something like genocide.
When we’re looking at the way we’re dealing with stuff in the Middle East, we’re already there. We’re just not there domestically. It’s horrifying. Our entire situation is horrible, and I don’t see it getting better anytime soon.
ROQAYAH: Honestly, neither do I. There’s no positive way to spin it, even in terms of solidarity movements coming up. Yeah, that’s great and wonderful, but when we have even Hillary Clinton, who is supposed to be the better choice this election saying—The only time she mentions Muslims is to say, oh, you need to spy on one another. You need to report one another. The only time they ever mention Muslims is when they want to talk about terrorism. We’re nothing beyond that whole subject. If you ever want to talk about a Muslim, it’s only to talk about terrorism. That is it. No matter what political spectrum you’re on, that is what you focus on. They need to report on one another. They need to become what Hillary Clinton called the forefront of homeland security efforts and what have you. So, until the conversation changes, nothing outside it domestically will change.
ARNESSA: No, not at all, and I think the whole thing with Hillary and Trump is on one hand you have one candidate, who is just so openly hateful and openly racist and openly Islamophobic, who is calling for a Muslim ban and telling us we need to spy on each other. And then, you have Hillary Clinton, who also kind of parrots that when she says they need to be the forefront of homeland security.
I’m a 27 year-old single mother. I have nothing to do with terrorism. I can’t be your eyes, your eyes, because that I surround myself are people that are my age, who are worried about regular things, like getting done with finals and finishing their master’s degree and making sure that their kid [inaudible] and going to work. But to them, we’re not looked at as regular people. I mean, because of the increased Islamophobia, I think they somehow believe that somehow there’s a secret code we all communicate in and we just know when bad things are going to happen.
ROQAYAH: If Muslims knew a secret code, I wish somebody would tell me because I have no fucking idea whenever something horrible is going to happen. I wouldn’t be able to tell you. I mean, if you could tell me, Arnessa that would be great because I have no idea.
ARNESSA: I know. It’s so absurd to think that regular people can somehow solve terrorism. Like people who are part of ISIS or al Qaeda are not going to listen to me and you. They know very well that the things they are doing are impacting us negatively. They don’t care just like the liberals and the Republicans don’t care. So I oftentimes feel that we’re very alone in this fight, and like you said, until the conversation changes, until the way we discuss Muslim people changes, it’s just not going to get better at all.
ROQAYAH: Moving away from like Islamophobia and terrorism and stuff, I wanted to talk about how you’re oftentimes really open with your followers on Twitter about the struggles you face, whether it’s trauma stemming from the genocide in Bosnia or what you deal with as a single mom. Something you revealed recently is you’ve been diagnosed with cervical cancer. How have you been dealing with not only being sick but being sick as a single mom? And how have you told your daughter about what you’re dealing with if you have at all?
ARNESSA: I haven’t told her actually. I’ve decided that I kind of shelter her from that. The advice of my doctors was continue on with life as you usually would. I was on bed rest when we got through that initial heavy phase of the treatment. Then I was just like, okay, now it’s time to get back to regular life. But I haven’t told her.
I’m really thankful because I have two awesome parents. Through this treatment, they’ve definitely been entertaining her while I recover. I’ve been doing all the regular stuff, where we have our regular day-to-day kind of thing. But on those days when I have treatment, I’m keeping her sheltered because she’s going to spend time with my parents or my brother or even her dad and his family. So it’s been kind of a community effort to not have her worry and I don’t want her to be sad cause I don’t want her to think about the possibility of what would happen. She’s still young.
Dealing with having cancer has been definitely stressful. Not from that sort of perspective of I have cancer and this sucks but the reality of our healthcare system and how expensive it actually is to keep yourself healthy. That’s been the main stressor for me, as well as the way that people react to you when you have cancer.
I think the minute I came out and told people, hey, I have cancer, but this is where I’m at and it’s fine and I’l get it figured out, most people are started looking at me as if I was already dead. It was really strange cause just people came out of the woodwork to become my friend really quickly before I died. It was people asking me to spend time with them or visit me in the hospital. I don’t want you to visit me in the hospital.
And I’ve seen people in my life before go through cancer treatment, and a person is in the hospital bed and other people around them are taking selfies and then they post it to Facebook and then they post some really sad, performative message about how great this person is. I just really didn’t want that. I still don’t want that. I’m sick. It sucks, and you know, I’ll get through it and it’s fine but I’m not going to be a thing that you can use for likes and shares.
ROQAYAH: You called that performative. In July, you posted a really moving thread—I found it really moving—about how people only talk to you now to bring up cancer and the subject of what you called performative empathy. That’s how you described all of this hanging out with you at the hospital, posting selfies and really sad quotes, and you called that performative empathy.
ARNESSA: It’s this thing, where people are being there for you and they’re being empathetic for you for a specific reason and to get something out of it. They’re performing the friendship, and they’re performing the care [inaudible] toward you. And you can tell. I don’t know if they realize that you can tell, but you can tell when it’s real.
Because for those people that I have real valid friendships with, they knew that I wasn’t ready to talk about it or talk about how I feel about it. So, then it was like, alright, you don’t want to talk about it. How about we just sit around and watch a movie? Or how about I take you out for dinner and drinks? Kind of we’re just going to move on. We’re going to go ahead and live life and I’m here if you need me. Whereas for the people who are performing empathy, it’s just let me take a picture of you while you’re at your absolute worst so I can tell people on Facebook and Instagram how great of a person I am because I’m friends with a sick girl. And you know, it was this sort of trying to turn me into a martyr in a way.
I was making a lot of fun of the cancer, and I was kind of just being silly about it, and people would say how are you dealing with it. I’d say things like the only thing I’m worried about is my hair falling out because I’m a really shallow person. And they would be like it’s not good to poke fun. Who cares about hair? And I’d be like, I care about my hair. Maybe you don’t realize how big of an issue that is because you’re not going through that. But they want you to be somber and they want you to be sad and they want you to rely on them and be completely vulnerable with them and it’s just—I don’t know.
I call it sick people porn, and I think people [inaudible]. When you are sick, you really can’t win because people want you to be really humble and meek and really grateful for the fact that you’re giving them this sort of very fake kind of love or friendship that they’re providing. It’s strange. I mean, calling somebody that you haven’t spoken to in like a year to hang out with them just because they have cancer, it’s weird. I didn’t suddenly become an angel because I got cancer. That’s not how it works. I’m still me. This is still my personality. Just whatever I’m sick.
ROQAYAH: I went through something similar. Thankfully, my situation wasn’t to the point where I was dealing with too much of that sick people porn, as you call it. But whenever I had brain tumor scare, all of a sudden people that I haven’t spoken to in five years came out of the woodwork because they heard about it. Then after everything was better, they disappeared again. So, you can tell when that sort of empathy is for their own benefit and whenever it’s real.
ARNESSA: Right. Yeah, you can definitely tell. I can’t wrap my head around it.
ROQAYAH: It’s just sickening. It’s just vile.
ARNESSA: Yeah, and I’m like oh, god, get away from me.
ROQAYAH: On the subject of dealing with an illness, you mentioned healthcare. So what have you struggled with in terms of the financial aspect of being sick and finding health care coverage?
ARNESSA: I was able to get health care coverage thankfully and I have it, but then it was just the added expenses. One, not being able to work. Two, paying for certain medications that are not covered, like paying for the therapy. It’s really expensive. Like every single day I get a bill for something or other, even with health care coverage. It’s been really stressful.
I’ve always heard about how ridiculous the health care system is in this country and why we need universal health care. I’ve always been for universal health care, and I think this solidified the fact that we need it, like me going through this experience of having to not work because I was on bed rest. That means that your wages are being taken away from you, and you have bills. I’m really lucky, I think, and I know there’s people that have it a lot worse than me. But I can’t believe that being healthy is as expensive as it is. One chemotherapy session costs $11,000 to $14,000.
ROQAYAH: Everyone and their mother basically knows I’m a Marxist. To think that people are okay with human beings struggling to survive in certain situations, and the fact that a lot of Americans have an issue with people not working. So, imagine we hear stories all the time of how brave and how amazing or how powerful it is for this however old year-old man to be working while he’s sick because he can’t afford something.
Instead of saying, this is really sickening. He shouldn’t be working at all. His health care should be free. They’re saying, oh, no, this is wonderful. Look, he’s not lazy. And, to imagine, you have to pay to get chemotherapy, something you need. I’m not buying a damn Mercedes-Benz. I’m trying to make sure I don’t die. I’m trying to make sure I don’t get sick. I’m trying to make sure my kid is okay. But to think that people are completely find with having to pay for health insurance in the way that we see in the U.S.—
Whenever I tell people in Australia, for example, I had a regular eye exam in Australia for the first time in like two or three years ago. The doctor saw the back of my eye and said you need to go see a neurosurgeon because there’s a big black mass, and it’s probably a brain tumor. I had all of these tests done, all of these scans done. I went to the front of the medical clinic and gave her my debit card and she looked at me like I was insane. She goes, what are you doing? Don’t you have a Medicare card? I showed her a Medicare card. I was on a visa. I wasn’t a resident then. It didn’t cost me a penny. I had a spinal tap. It didn’t cost me a cent. All up for three years with the medication, I didn’t even have to pay around $300.
I had a spinal tap last year in New York. It cost me—I didn’t even pay it off because I can’t pay it. It cost me $3,500. Can you imagine? Whenever I tell people in Australia that people in the U.S. are literally starting GoFundMes because they can’t pay their medical bills, they think I’m out of my mind. But it happens every day and they’re forcing poor people especially into situations where they have to pay so they can see another day, and it’s mind-boggling.
ARNESSA: I have a lot of family in the Nordic states who have free health care. When I got sick and when we talked about paying for the treatment, they didn’t understand, like me explaining that I had to pay an amount of money through this and that. They couldn’t fathom it. To them, it was just what do you mean? You’re sick. You go to the doctor. You get treatment. And I was just like no, not here. Not how it works.
I think it’s just weird that we are living in a place and in a time, where we are punishing sick people for being sick. That’s basically how I view it. That sort of glorification of people working while they’re immensely sick and while they’re not able to physically work but they’re still pushing and they’re still working because they have to. Otherwise, they’re family won’t eat. They won’t be able to pay for the treatment. That glorification that we have for that is ridiculous.
The natural human thing would be to say this person is sick, and they should rest and they should get better and they should get care because they’re human and every human deserves to live. It’s that basic. We don’t do it that way.
ROQAYAH: On the subject of dealing with an illness, what do you think people should do in terms of communicating with those that are sick around them so they don’t indulge in performative empathy? What would you like someone to do to show solidarity with what you are going through?
ARNESSA: Realize I’m aware that I’m sick, and that as sad as you may feel about me being sick, I’m still going through it. Not you. It’s mainly that thing—recognize that sickness, that illness is about me and not about your feelings. If you really want to be my friend, then treat me like you would in any other case. The thing with sick people that there’s always people babying us in a way. We’re still adults. We’re still functional. We’re just going through something. Hopefully, some of us will get better. Some of us won’t but understand that I won’t be able to do the things that I did. That’s not being lazy or giving in to depression. That’s just the reality. My body doesn’t function the way it did when I was healthy. I am tired. So when I say I just need to rest, you need to understand that as well.
There is this thing where the expectation for people, who are sick, is that it’s not good enough when we are laying down and taking care of our bodies but it’s also not appropriate for us to be living our lives and going out laughing and having a good time. What people would like to do is to just see us be sick. That’s it. That’s our whole point of our existence is to be sick and to be sad about being sick and for them to come in and take care of our sadness in a way, which is bullshit. Treat me like you would when I was healthy. Just have a little more understanding. Some days are going to be great, and some days I’ll feel like crap.