On Friday 24 October, I went to a UCJAMS event at the Logan Center that showcased the works of three UChicago undergraduates. A friend of mine at the event introduced me to one of the artists, Carrie Chui, a Biological Sciences and Visual Arts major in the Class of 2015. Her piece on exhibition was a photo project entitled Everything is the same, nothing is the same. It documented a typical day in the life of Maria, a 51-year old Hispanic woman from the Chicago Lawn neighborhood who had been recently diagnosed with type 2 Diabetes. After having met Carrie, I asked her if I could interview her for the Memoryhouse Blog. She obliged, and the following is a transcript of the interview I conducted with her on Friday 31 October, 2014.
MH: So I guess, the first thing I want to ask, is why did you think about diabetes in particular? How did you get started on this project? Why disease, and why diabetes also?
Carrie: My mom, she was recently diagnosed with diabetes, so there’s definitely that personal element at play. I live near Chinatown, in Bridgeport, in Chicago. And I wouldn’t necessarily say that it’s an underserved community, but I will say that a lot of people are very uninformed about the disease. For instance, mom will come home and ask me what insulin is and how to inject it. Like, I’m not the doctor! And also, I’ve been working at the Kovler Diabetes Center on campus, for about four years; and I go to a lot of events, and I see a lot of people, from the local community, that are people mostly from the South Side of Chicago. And they would come to our booths and ask questions like, “What should I eat? I have diabetes.” And these are very fundamental questions that they should know as people diagnosed with it. So it was something that I really took to heart, and I thought it was really important to me to kind of let people know what these people are dealing with on a daily basis. So I definitely wanted that informative quality in this piece.
MH: Another thing I was wondering was how exactly did you find Maria? Who is Maria, exactly? I know she’s a—it says here (in the introduction to the project)—Hispanic woman, 51 years old, in the Chicago Lawn neighborhood; but who is her family, what does she do, how was her life prior to this [diagnosis]? I would really like to know more about her, if you happen to know more about her.
Carrie: So over the summer, I just kind of dropped fliers around the clinics of the South Side, the Southwest Side of Chicago; and I let these people come to me with their stories, if they wanted to share them. So, yeah, she [Maria] calls me, and she was really interesting. She wasn’t fluent in English, but she still wanted her voice to be heard. So she calls me, and I scheduled a day to meet up with her; it was kind of hard to find a time when she was free, but when she was [free] on that day she wasn’t working—she works in a factory, I don’t remember the name of it specifically—but her life is very, you know I feel that, in a way, she is very representative of the general population in Chicago Lawn. Chicago Lawn has a largely Hispanic population. And she tells me, you know, her sisters, her brothers, they do fairly, like, the same things—either construction or factory work. I didn’t want her to use her full name, and I interviewed her with a set of questions. They were very general questions. I asked them questions like, “Oh, so what do you look forward to most in the day? Can I have a tour of the kitchen?” Yeah, I went to her home. I asked things like, “So what do you have for breakfast?” They’re [the questions are] not necessarily diabetes-specific, but the answers are largely informed by how she’s dealing with the disease. What else?
MH: Well, you were saying, that Maria is largely representative of her Hispanic community; and what I was wondering—upon looking at these photos—is that did you try to show that representative feature photographically by not showing her face but by obscuring her from view? Or was that just the subject’s choice? Because you show pictures of her husband, of her father, of her home; but in every photo of Maria, she’s either obscured from view, for instance the photo where she is pricking her finger to test her blood. So I was wondering, what inspired not showing her face directly, why you chose to do so?
Carrie: I guess the reason was two-fold. First, I thought…one part of it is that by not showing her face, I make it [the photograph] more generalized; her experience becomes a general experience of a woman living with diabetes in Chicago Lawn. But also, I was worried about potential patient privacy rights. She said she wouldn’t mind [showing her face], but I also told her that generally protecting the privacy of the patient is a good idea. Also, I was talking to the doctors who were, like, my mentors; and I asked them, “Is there a way to represent them without having to show their faces?”
MH: I’m sorry, who were her doctors who were your mentors?
Carrie: Oh, they’re not her doctors, but they’re the doctors at the diabetes center I work for.
MH: And what was their advice to you? Do you happen to recall?
Carrie: Just to be considerate, and if they show any hesitation about showing their face at all, just try to work around that…And at some points, Maria was like, “Oh, I look so bad in this photo;” or like, “Can I not be in this? Can you not show my face?” She had concerns, but they were more surface—
MH: Aesthetic, rather than health-related.
MH: And, because you mentioned that her concerns were more aesthetic than health-related and also you seem to, it seems as though a big part of this—of your project—is that Maria is not well-informed about her condition and how to deal with it. I was wondering, did you perhaps find that her, that the fact that her worries were aesthetic rather than health-related were indicative or reflective of this, of her not necessarily understanding how to deal with this situation; and if so, is this—do you think—representative of the greater community surrounding her?
Carrie: I think that’s definitely interesting; that’s a really interesting question that I didn’t really think about while I was doing it, but definitely. She [Maria] would tell me that she tries to inject herself [with insulin] privately; she doesn’t want to be seen. She acknowledges that a large part of her life is very much linked with diabetes, but she doesn’t want to be that label. That’s not her entire life. So yeah, there’s definitely that push and pull, that tension from being associated with the disease.
MH: I wanted to ask also, some of the captions are—of course—pretty self-explanatory, like “Desayunos?” or “Tortillas” or “Labels.” I suppose “Labels” is a sort of double entendre; as you were saying, Maria doesn’t want to be labeled by her condition.) I found that interesting, and I had some ideas about what some of your captions meant; but I first want to hear your response: How did you choose the captions that you chose? What was the process behind them, do you think?
Carrie: It was definitely not like…it was a long process. I think—you know I don’t speak Spanish—but she does. And her culture is really rich. And when you go to her house, it is filled with relics of her culture. And I found that, you know, maybe it was something, I think I wanted to point to how when we consider patients living with diabetes, we have to really look at the individual and how these treatments for diabetes ultimately have to be very culturally tailored. You know, like with the “Tortillas” caption; how do you have them just stop eating tortillas or even really cut down on tortillas? So I definitely wanted that political push or undertone; but I also wanted to make them very accessible to the general viewer, who may not be super-familiar with the disease or what insulin is, or what “high” [cf. the caption “High Again”] meant. I tried to also keep the descriptions very informative.
MH: For instance, one of the ones that I really liked—and correct me if my interpretation is wrong—was “Eyes and Toes,” which has the description: “It is not uncommon for diabetes patients to be prescribed check-ups for various diabetes-related complications. Uneager and admittedly unlikely to fulfill all of her Rx prescriptions, Maria is nonetheless scheduled to see a cardiologist this coming January–an earliest available appointment at her local family health center.” I really liked the title “Eyes and Toes” because geographically, distance-wise, the eyes and toes are so removed; and yet, they are both affected by this disease called diabetes. People can lose their toes, become blind. I was just wondering, was that the inspiration for that title? The fact that diabetes is just so pervasive?
Carrie: Yeah, exactly. Yeah, I think that’s exactly what I was going for. You know, the disease is so multi-faceted. It’s so ingrained in these peoples’ lives: physically, emotionally, and you know, touches on all facets of their lives. So yeah, I was glad that you mentioned that and that you saw that kind of reading in there.
MH: And if I may ask, Maria seems to have a very strong support group in her family: her husband, her father, her children. But, I was just wondering, how has diabetes affected her relationship with the various members of her family? Would you happen to know?
Carrie: Yeah, I guess I picked up some things here and there. When we visited her dad—who calls himself Papo, Papo’s Sweet Corn, that’s the name of his stand—he’d say, “Oh, Maria would have some of my corn every time she visits, but she stopped doing that. And, you know, it’s kind of strange for me; but it’s also something she had to do.” So, there are definitely kind of, like, compromises as far as that goes. They’re difficult; but in a way, their bonds are kind of even stronger now that they’re able to meet each other halfway.
MH: Do you know of how it is with her husband? Do you know how her relationship with her husband or children has changed, or no? I was just curious.
Carrie: Not so much the husband; I know that he would say, “Maria is my wife; I love her.” But what I felt was that their love was really strong. Her children, she didn’t really mention much about her children because they’re not living with her at the moment, but that would be interesting to hear more from her about.
MH: And just because you were saying how there isn’t very much health information about how to cope, that people in underserved neighborhoods such as Chicago Lawn, they lack the resources necessary to better understand how to deal with and treat diabetes; on the one hand, there is this support Maria has from her family, but on the other hand: Is there any community push for greater understanding in these neighborhoods or any family push as far as medical information goes? Is Maria encouraged to obtain better information or better understanding of her condition from her family, do you feel? Or do you feel that their support is much more, sort of, just being there for her? Not that it’s not important, but I was just wondering if their support was also of a more technical, medical nature as it were?
Carrie: I think they definitely get a sense of what diabetes is and what people with diabetes generally need to do, but on a very superficial level, as in “diabetes is this disease where you can’t have sugar,” and they don’t know that tortillas, corn, is full of carbohydrates—
MH: Yeah, she tests her finger [to check her blood sugar] and she says, “I’m high, but I don’t even have sweets.” Well, sweets aren’t the only thing containing sugar; so many things contain sugar.
Carrie: So I think if they could, they definitely would give her more practical, technical support and encourage her to go to all of her appointments she’s been missing. But the thing is, I don’t feel that the understanding is quite there.
MH: And one of the things that I really liked about this—because I have a, my grandmother recently got diagnosed with diabetes; and my dad, he’s sort of on the border between being diabetic and not; I think it’s called “pre-diabetic.” So he has to monitor his blood sugar very frequently. And, also, a few other members of my family have chronic illness, and what I find very interesting about chronic illness and that is very interesting to think about but also a bit morose, is how your identity becomes, sort of, determined by the physicality of your condition. You know what I mean? Like, your person becomes determined, sort of, by bodily processes that are beyond your control.
Carrie: Yeah, yeah.
MH: And I really liked, I really liked how that shone through in this photography project of yours. And lastly: Where was your project exhibited. Because I know it was in the BSLC [Biological Sciences Learning Center]; if you could tell me where and when it was exhibited, that would be great.
Carrie: Yeah, on the 23rd and 24th [of October 2014]. It was a day-long exhibition at the BSLC on the 23rd. And on the 24th, I brought it to Logan for the JAMFest.
MH: Right, that’s where I met you.
MH: Thank you.
Carrie: Thank you so much.