The Things We Schlep: A Short Cultural Study Of Type 1 Diabetes

by Eric J. Weiner

The word “schlep” comes from the Yiddish “schlepn,” which means to drag or haul. You don’t have to be Jewish to be a schlepper, although it couldn’t hurt. Amidst the deepening economic and political inequities informing everyday life, schlepping is one of the great social equalizers. To see a person in the subway or on the street, schlepless as it were, can be a bit disorienting. Who is this person who can travel so unencumbered? He (and it’s almost always a “he”) must be wealthy and powerful beyond imagination: A king or prince? A tech-guru? A hip-hop mogul? A cannabis hedge fund manager? Maybe he’s a mysterious, self-identified “founder” flush with new money and the freedom from schlepping it buys. Maybe he has “people” to schlep for him. They must be “professional” schleppers undoubtedly paid below a living-wage to schlep things they could never afford to schlep themselves.

Yet at the same time, I look upon this extravagantly empty-handed man-king with a degree of benevolent pity. Nothing to schlep must make traveling through the world an empty, meaningless experience. Absent the things he doesn’t carry how would he know not only where he is but who he is? It is true that we may be more than the sum total of what we schlep, but take away the stuff we schlep and it becomes difficult to know where the measure of who and where we are even begins.

Providing the theoretical and methodological foundation for such an analysis of the things we schlep, Stuart Hall’s (1997) seminal analysis of the Sony Walkman articulates the things people schlep to a general theory of culture itself. For Hall, the things we schlep represent a kind of language and as a consequence the study of cultural artifacts hold enormous promise in helping us understand complex systems of representation, meaning and power.

By analyzing these things through the “circuit of culture”—representation, identity, production, consumption and regulation—we can uncover not only the ideological nature of everyday life, but the way everyday life, through “social practices,” engorges experience with meanings and laces those meanings with power. As such, the things we carry articulate with meanings as they are constructed and circulate through differential relations of power. They help shape who we are, how we practice what we do, while also influencing how we see and are seen. More than inanimate objects, the things we schlep are tools of knowledge, artifacts of cultural memory, significant in terms of their semiotic power to both mediate and construct reality. As a set of shared social practices as well as a way of making meaning of, in, and with the world, studying cultural artifacts–the things we schlep–is a powerful way for people to interpret and understand the social processes by which experience becomes meaningful and tangible.

I typically schlep my things in a small, unadorned black leather satchel, longer than it is wide, that my wife bought me for my birthday several years ago. Some men get power tools. I got a bag. I love it. Typically, I leave my apartment in NYC with the following things: I-phone; Macbook; Mints/gum; Charger; Apple wireless ear buds; The New Yorker magazine or small book; Small notepad; Pen; Band-Aid. Every day I schlep this stuff around NYC. Whether I actually need the stuff or use it is beside the point. It’s like an urban Swiss-army kit. With my lap-top I am able to write anywhere and if there is Wifi, look out, there’s no telling what I can do. My mobile device keeps me connected to the internet and all the people in my network. I can talk, text, or “face-time” anyone, anytime. On the outside chance I have an actual face-to-face interaction with someone I can pop a mint or piece of gum to improve the smell of my breath. My ear buds let me tune in or tune out depending upon your perspective on such things. The magazine or book keeps me occupied should I not want to write during my downtime on the subway or in the park. The notepad rarely gets used as does the pen but I keep it out of habit and just in case all the electricity should go out in the city, or some cataclysmic event should disrupt my cell service, or if I have to pass a secret note to someone, or finally, if I have to defend myself, I can use it like Jason Bourne would as a dagger. You should always carry at least one band-aid as you never know when you may rub a blister or get a small cut. And if someone you are with should rub a blister or get a small cut, you can offer the person your band-aid (just make sure to replace it as soon as you get home or you might forget).

All of these things mean something within the general cultural landscape in which I schlep while also making the cultural landscape meaningful. They mediate my experiences, for better or worse, and signal my own reading of what is improbable but possible. They also signal to varying degrees my social and cultural capital and my (dis)connection from their means of production. Beyond the scope of this essay, the things I don’t schlep say as much or maybe even more about who and where I am than the things I do.

But since my eight-year old daughter was diagnosed with Type 1 Diabetes (T1D) (some people might know this as “juvenile diabetes”) in October 2017, in addition to those things, I (or more often than not, when we travel together, my wife) now also must carry: Insulin pens (2); Several needles; Alcohol wipes; A blood lancet; Multiple lancets; A container of test strips; Glucose tablets; A small container of juice; Nuts, raisins, or some form of granola bar; Clementine, orange or tangerine; Brown rice crackers; Glucagon. My daughter also carries her smart phone in a small cross body bag that has room for four glucose tablets. From Etsy, she chose a bag with butterflies and decorative designs of flowers. She must carry this bag throughout the day because the phone and watch must be within fifty feet of the Dexcom 6 (continuous blood glucose monitor (CGM)) she wears on her arm to get blood glucose (BG) readings. She also, of course, as all school-age kids in NYC and throughout the country must, carries a large backpack filled with the normal stuff of schooling. Once she is old enough to independently manage her T1D, she will carry all of these things whenever she leaves home. Even a trip down the elevator to the mailroom, or a quick jaunt on the subway requires carrying these things as it is possible, however improbable, that the elevator or subway breaks down. Just recently in NYC we had a vast power outage and for hours the subways and elevators stopped working. If someone with T1D was stuck in either without their supplies and their BG levels started to rapidly drop (or rise), the consequences could be life-threatening. It’s an extreme example, but living with T1D is a lesson in living in “what-if emergency time” all the time. It is a disease that demands you plan daily for the worst and hope for the best. As I said to a friend just the other night who asked if things were okay, we are okay most of the time, until we’re not. Things can go sideways quickly.

In addition to schlepping the stuff listed above, my daughter also, as just mentioned, “wears” a CGM and an apple watch, and we all carry “smart” phones so that we can remotely receive her BG readings via an app 24 hours a day, seven days a week. It’s important to note that the word “wears” vs “carries” suggests an exterior accoutrement or fashion. But it would be more accurate to describe the devices she wears, if not as parasitic, then as unwelcome yet beneficial attachments, just another two things she “must” carry on her body. Even though the benefits of the devices are immeasurable and we do technically have a choice about using them, my daughter says they make her feel like a robot. To choose not to wear/carry these devices when you can afford to do so, in my mind, is completely irrational. Knowing what her BG numbers are in real time (actually five minutes behind her true BG level) allows for better management of the disease. All of the really horrible things (for examples, just google “horrible things and T1D” and you’ll see the horror of which I refer) that can happen to a person with high and low BG numbers over long periods of time without treatment no longer have to happen because of this new cyborg technology. Yet she still steadfastly refuses to use an insulin pump (this is a device that attaches to the the body and delivers insulin via a small subcutaneously inserted tube to the host). Irrational? Not as clear cut as the argument is for wearing the CGM monitor as pumps come with a number of downsides that offset to some degree their overall benefits. I assume she will, at some point in the near future, decide to wear a pump, especially as the technology improves and biomedical engineers are able to create a more seamless relationship between the CGM monitor and the pump. Currently, software that “loops” (I’ll explain what this is later in the essay) the CGM to the insulin pump is what’s available and the technology is still in its infancy. But as of this writing she refuses to wear one, “choosing” instead to get multiple injections of insulin throughout the day and night. She says she does not like feeling like a robot, which is how she feels with these biomedical devices attached to her. I think about her relationship to the devices in terms of cyborg technologies. Cyborgs are people who have integrated mechanical/digital devices into their human biology/physiology. Thinking about Donna Haraway’s work, I thought that was a much cooler way to think about it. She doesn’t share my enthusiasm. Maybe she will once she reads The Cyborg Manifesto, but I doubt it.

As I write this part of our story, it’s 5:27am on Saturday. I’ve been awake since 4am because the app on my phone alerted me via an alarm to my daughter’s low BG. My wife already gave her 14 grams of sugar in juice form at 1am. She can drink the juice without completely waking up. But it did not get her through the night. The Lantus (a long acting insulin) must be too strong and keeps bringing her numbers down. We’ll have to reduce the Lantus the following evening, but for now the only thing to do is get her numbers up. If her BG drops too low, she will lose consciousness in her sleep and die or could suffer debilitating seizures. This is not just true for my daughter, but for all of us. The difference is that my daughter’s immune system, without good reason, attacks the beta cells in her pancreas as though they were a foreign invader. This is why T1D is an autoimmune disease. These beta cells produce insulin, the chemical that manages sugar in our blood and cells. Because of this, the system that most people have to prevent hypoglycemia (low blood sugar) or diabetic ketoacidosis (high blood sugar), both potentially deadly if not treated immediately, no longer works.

Except for having T1D, she’s a perfectly healthy eight-year-old. She’s sinewy and strong like a ballet dancer. Against common misconceptions, she can eat almost anything as long as we “cover” the carbs in what she eats with insulin. “Cover” refers to the process by which we determine, based upon a mathematical equation, how much insulin she needs to turn her blood sugars into energy that her body can use. Every time she eats or drinks anything with carbohydrates, she must cover it with insulin. We must “correct” her BG with insulin when/if it gets too high, which is a different equation from the one we must use to determine coverage. We also can’t correct her BG within three hours of her receiving insulin for coverage or correction. Sometimes we must cover and correct at the same time which requires us to add the two sums to get the total amount of insulin she will need. However empirical this process sounds, it is not an exact science. Diabetes researchers don’t really know why the body suddenly turns against itself. Some combination of genetics and environment converge to essentially confuse the immune system into thinking perfectly good cells are a threat. There is no cure for T1D and its been around for centuries. Before the invention of insulin, T1D was a death sentence.

For those readers who have T1D or support someone who does, our struggle to manage this infuriating and frightening disease will not be unique or unusual except possibly for the fact that we have excellent healthcare insurance because of my union job at the university and we live in New York City. Without my healthcare insurance, our struggle to care for our daughter would be immeasurably more difficult. Living in New York City also has its benefits. Not only does it have excellent doctors and centers that specialize in T1D, but also enough people living here that there is an established community of families with children who have T1D. Even so, in my daughter’s school in NYC there are only four other children with T1D (and I just learned they hired a new teacher who also has T1D). It is a rare disease, although it seems to be effecting more people every day. If we lived in a remote area of the country, I am sure our struggle would be much more difficult. And it’s worth repeating that without the union fighting for exceptional healthcare benefits at a reasonable cost, we could easily go broke, as many do, buying insulin and other associated T1D supplies. Even so, my wife cannot work as much as she did because of the care and attention my daughter now needs on a daily basis and this of course effects our bottom-line.

Representations matter but especially when it comes to disease and disability. Even though we carry her supplies, my daughter chose a lilac-colored leather case in which to consolidate all her gear. This case is then carried in the bags already described. Seasoned schleppers schlep different stuff in different bags, but all consolidated in one large bag. The diabetes educator in the hospital, who also had T1D, bought herself a Prada clutch in which to carry her supplies, which were then carried in a large Louis Vuitton tote. This she told us was her way of easing the burden of having T1D and having to schlep around all the associated swag. These bags made her feel powerful, cool and sexy in spite of a disease that constantly reminded her of her fragility. With the exception of Joe from Frank Zappa’s Joe’s Garage, who has, if you remember, a torrid sexual encounter with Sy Borg, having pumps, tubes and monitors attached to the body is not many people’s idea of sexy.

We recognize the meaning and subsequent values that are placed on something as simple as a bag. In utilitarian terms, it wouldn’t matter beyond the practical considerations associated with schlepping all this stuff. We pick bags that say something about how we want to be seen as we unzip, unsnap, unbuckle, or untie the vessel in which needles, wipes, insulin, etc., will emerge in a routine that will become second nature but as of this writing is still wrought with a bit of bumbling and awkwardness. But it’s not just about what others think; it’s an attempt to own the disease without letting it “over-determine” who we are or what we can be. There is a built-in contradiction to this relationship. We must own it through our representation of it, yet we must also work to marginalize it in terms of its power to define her/us. One of the things we have been diligent about with our daughter is to tell her that T1D is something she has, not who she is. She’s not a diabetic; she has T1D. It’s similar to what I try and teach teachers about disruptive or troubled students; that is, their students might have a problem, but they are not the problem.

This is a difficult lesson to teach and learn as the T1D community has tried to establish itself as a unified culture and as such identity becomes a site in which common social practices bind people with T1D together. “T1D and Proud” is a common refrain from some people who have made T1D a public part of their identity. A dear friend of mine, who I have known for thirty years and has been living with T1D for approximately 40 years, maybe more, has a large tattoo on her wrist that announces her T1D. It’s a beautiful and powerful symbol of her courage and strength. It also plays the role of a medical alert bracelet by announcing her disease in the event she needs medical attention and is unable to communicate. I imagine she would say that for her T1D is only a part of who she is, but a part that is inseparable from other facets of her identity. In current parlance, her T1D is part of a chorus of intersectional identities that are always in conversation, always conditioning experience and shaping perceptions.

For my daughter, “T1D and proud” is still a difficult idea to internalize. She actually said to me that she wasn’t exactly proud to have T1D and didn’t quite agree with the sentiment. I understand her hesitation. But the first time she felt embarrassed by her T1D, the semiotic work that the idea of pride does was more understandable. Embarrassment is the dialectic of pride and leaves one feeling diminished. If she has to choose between pride and embarrassment, I hope pride wins out. It remains for her a question that I hope she can answer in a way that is empowering. At this point, T1D does not define who she is; it is simply something she has, and as she says, “Everyone has something.”

Certainly, one important and powerful implication of T1D culture, beyond the question of individual identity, is its formative ability to shape policy at the local and national registers. It has been widely reported how the major suppliers of insulin are gouging people who need insulin to live. From the pharmaceutical companies to the insurance middlemen, people who need insulin and all the other supplies that we all must schlep are literally going broke or, in some cases, dying from not being able to afford the costs associated with managing the disease. This is unconscionable. The original inventors of insulin understood that it was too important a medicine for anyone to own and profit from so in 1923 they sold the patent for one dollar to the University of Toronto. In the United States, neoliberal ideology frames drug and health policy at the expense of people’s health and well-being. “Profit over people,” Noam Chomsky’s phrase that succinctly captures the basic tenet of neoliberalism, couldn’t be truer than in the insulin crisis in the United States. Various diabetes organizations are fighting against these inhumane policies. Because they are organized at the level of culture, these organizations have had great success in growing a base of support that can help influence policy and hopefully save lives as well as livelihoods. In Bourdieu’s terms, we might say that embracing T1D at the level of political identity provides social capital. But in a culture that marginalizes people with disabilities, it also can diminish one’s cultural capital. And there’s the rub.

For my daughter, the potency and importance of social capital is less important than cultural capital. She feels this most acutely during her normal everyday activities. My daughter typically doesn’t want anyone to see her getting shots and certainly doesn’t feel a sense of pride when she must sit on the side of the pool eating a snack to raise her numbers while the other kids play. Swimming, tennis, gymnastics, running around the park with her friends, and her favorite activity, ballet, require extra diligence because physical activity is one of many variables that effect BG levels in the body. Along with hormones, carbohydrates, air temperature, stress, sleep, “unknowns”, and sickness (if a cold is brewing it can affect BG levels long before there are any visible signs of the cold), physical activity makes T1D particularly challenging. I’ve seen her numbers drop radically when she swims. But I’ve also seen them not drop at all. It’s the nature of the disease that there are so many variables at play that it is impossible to control for all of them all of the time. But that is what is required in order to keep her BG numbers in an acceptable range.

As a consequence of having to schlep our gear to the beach, ballet studio, pool, ski mountain…everywhere, these places and the “social practices” associated with them come to mean something different than if we weren’t schlepping these things. The pool is no longer simply a place to cool off and have fun or a place to socialize, compete, or exercise. It represents, as well, a place of potential danger. We protect her as much as we can from the reality as well as from the symbolic associations articulated by T1D and the swimming pool. But when she gets out of the pool after a particularly rigorous time of splashing, giggling, diving for rings, racing her friends, and doing big cannonballs, as happened recently, her BG was 45 and dropping (acceptable range is between 80-180). We didn’t know she was dropping because we lose connection with her CGM when she is in the water or more than fifty feet from her phone. We learned about her BG only after giving her a finger prick with the lancet. She quickly becomes conscious of her feelings which she describes as “shaky.” I run over to our bag, which is away from the water and in the shade, but close by. We immediately give her 14grams of sugar via a juice box. She hates juice. Her friends come around to see if she’s alright. She lays her head back into the lounge chair. She looks bad. No one is giggling anymore and she just wants her friends to leave her alone. After several uncomfortable and painfully slow minutes her numbers start to climb. Time is another one of those perceived constants that become brutally relative within the context of this disease. Fifteen minutes feels like an hour when waiting for plummeting BG numbers to reverse direction. She revives. Once her numbers are high enough, she goes back into the pool, but her play is noticeably less rambunctious.

Each environment represents a new set of challenges. The meanings change, but the game stays the same. My wife and I have become our daughter’s pancreas. Like Gregor Samsa in Kafka’s Metamorphosis, we have been transformed, as she has, by this disease on what feels like a molecular level. The things we schlep have become, in large part, who we are and who we must continue to be. If it’s not quite at the ontological level, it’s certainly at the level of culture and subjectivity. The pancreas, an organ I never thought about even once before my daughter’s diagnosis, is an elegant machine. It is able to regulate our sugars in a constantly changing field of experience to an incredibly specific degree. It’s a regulatory organ that must be consistently adapting to changing stimuli. Scientists have not even come close to replicating what a functioning pancreas can do. Yes, there are inventions and new technologies that attempt to replicate how the pancreas functions. By “looping” the CGM to an insulin pump, research engineers and DYI inventors have been able to design a somewhat crude insulin delivery system. It is far from the eloquent mannerisms of the pancreas. I start to understand why some scientists believe in a higher power when it comes to our existence. Something as mundane as the pancreas operates with such efficiency and grace that only when it breaks down and we try and replicate what it does for us do we begin to understand how much we don’t understand. As the saying goes, we know what we know. But it’s what we don’t know what we don’t know that might be, in the end, what we must know to move forward in order to find a cure or develop new technologies that can help us more efficiently manage T1D. In the meantime, we are her fumbling and bumbling pancreas, inelegant to a comic degree. But essential and life-sustaining. For an overview of what is happening in the community in regards to curative strategies and management techniques see https://beyondtype1.org/islet-transplantation-vs-technology/. This is an excellent summary of the most recent state of T1D research.

A few things to keep in mind if you should ever have the opportunity to spend time with a person or family managing T1D:

1. People with T1D can eat essentially anything, but they need to cover it with insulin;

2. People with T1D can compete at the highest levels, yet exercise can profoundly affect BG levels (i.e., so when you want your kid to race my kid in the swimming pool because you value competition, remember that it might not be a fair race depending on whether or not my kid’s BG levels are stable, and even then, hers will surely dip after a few laps negatively affecting her performance);

3. Low and high BG will affect physical and cognitive performance and effect emotional state of mind;

4. Parents of children with T1D rarely get a full night’s sleep and are therefore not always operating at peak performance;

5. Parents of children with T1D are consistently speaking to the school nurse and other caregivers throughout the day and night about correct dosages of insulin and whether BG levels are at appropriate levels for whatever the child is planning on doing at the time;

6. Some children with T1D have cell phones and watches so that they can monitor BG levels as well as share BG levels with assigned caregivers, not because they are spoiled by their parents—these devices are medical and not for pleasure or leisure;

7. If you see a parent fixed on her/his cell phone at the dining table, s/he might be entering carbohydrate counts into a spread sheet or looking up carb counts in a directory so that s/he can know how much insulin her/his child will need in order to eat her meal. She/he is not ignoring the child;

8. Try not to stare as we give our children injections of insulin. We can’t always go to the bathroom to give the shots;

9. The pumps and CGM typically are attached to the back of the arm, stomach, or upper buttocks. They vary in shape and size. If you really are curious, please ask the parent, not the child, what the thing is you are curious about;

10. T1D children are incredible as they are expected to do everything their peers do but they must do it with the pressure of fluctuating BG levels, constant monitoring, weekly removal/reinsertion of monitors/pumps, and for some, multiple injections of insulin per day. It reminds me of the famous comment about Ginger Rogers doing everything Fred Astaire did but “backwards and in heels.” Indeed, having T1D takes an enormous amount of psychic and emotional energy; they must do everything that non-T1D kids do, but metaphorically speaking, backwards and in heels. You would never know it from looking at them, but please be aware that this can be exhausting and stressful.

11. Many T1D children, at least sometimes, are not getting an uninterrupted full night’s sleep as they are half awakened by a low that needs remedying or a high that needs correcting. As a consequence, they might not be operating at their best in school, on the field, or in the studio even though the standards of performance and success are the same for T1D kids and non-T1D kids.

12. Parents and caregivers of T1D kids typically can’t just drop them off for playdates, sleepovers, or send them unaccompanied on field trips as they need someone who can respond to the demands of T1D;

13. Our kids are resilient, happy, creative and in some instances brilliant;

14. T1D parents know that there are much worse and more debilitating diseases in the world that effect other children, so you don’t have to remind us that other parents/children have it worse than we do;

15. T1D is what they have, not who they are.

I wanted to write this brief (and incomplete) cultural study about the things we schlep because of T1D as a form of cultural and critical pedagogy; that is, as a way to educate people about what it’s like to care for someone who has T1D as well as what it’s like for a “little” to live with T1D. Our story, as is true for so many people and families with T1D, is being written through the things we schlep as a lesson in patience, struggle, grit, determination, family, community, anxiety, fear, love, exhaustion, helplessness, and courage. There are too many people to mention who help us everyday, but the school nurse’s compassion, knowledge, and energy is something that is immeasurable in terms of its impact on our daily lives. We are forever grateful to her for her dedication and help.

Organizations like Naomi Berry Center in New York City and the Juvenile Diabetes Research Foundation (JDRF) are working to find a cure. If you have time, please visit their websites to learn more about T1D research. Beyond Type 1 is an organization that functions at a cultural level in terms of activism, information, and resources. I hope you will consider giving what you can to support all of their efforts. Thank you!

Naomi Berry Diabetes Center: http://www.nbdiabetes.org/

Juvenile Diabetes Research Foundation (JDRF): https://www.jdrf.org/

Beyond Type 1: https://beyondtype1.org/

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