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A big image of a partially bitten doughnut on the cover of a book about managing diabetes might seem like an eye-roller. But it’s spot-on as a reference to how this disease is portrayed in pop culture and society, perpetrating stereotypes and misinformation.
In the new book “Managing Diabetes: The Cultural Politics of Disease,” author Jeffrey A. Bennett of Vanderbilt University delves into the way diabetes is often described, represented, and talked about in today’s culture.
Bennett also shares tidbits from his own life with diabetes, having been diagnosed with T1D just before his 30th birthday in 2004. The author is an associate professor of communications studies who focuses on cultural topics around health, medicine, and LBGTQ issues.
Despite the title reference to “managing diabetes,” this 202-pager is not a guide to blood sugar control. Rather, it’s a highbrow read clearly penned by an academic that’s meant to be thought-provoking and challenge how we think about diabetes in a cultural context.
If you’re at all interested in themes like TV and movie portrayal of diabetes, blame and shame in society, and how celebrity messaging impacts perception of the disease, it’s worth the effort to check this book out. It certainly gets the mind going. Plus, readers may even learn a new word or two — always a bonus!
In this book you’ll find deep discussions of: media representations of diabetes, with comparisons to the HIV and AIDS world; the impact of the medical profession on disease perception and patient shaming; and analysis of public figure messaging. One of the six main chapters is devoted entirely to the JDRF’s evolution and how that national advocacy organization operates.
As you might expect, there are mentions of common misconceptions about the once-used “juvenile diabetes” label, how anyone of any age can develop T1D, and how type 2s are often blamed and stigmatized unfairly. There’s also talk of misguided phrases we’ve all heard about “the bad kind” of diabetes, and how insulin can be avoided in T1D (it can’t), and myths about how eating certain foods can supposedly cure diabetes.
“Disparate visions of diabetes and its management circulate unceasingly and inharmoniously in public culture, contributing to a confusion, if not opaque mystification, about the disease,” Bennett writes, pointing to language such as “epidemic” when referring to T2D and how it can be managed with pills or insulin.
“These contradictions occlude the fact that the paths to making a better life with diabetes are as diverse as the people who live with it.”
Not surprisingly, he references the 1989 movie “Steel Magnolias” as a case study of how society has been conditioned to think about T1D. He criticizes the iconic “Drink your juice, Shelby!” scene as being too dramatic because, in his view, hypoglycemic events are “momentarily fluctuations” simple to treat and pass quickly. He writes, “This widely consumed and circulated scene is perhaps most problematic because it suggests that people with diabetes are unable to gauge the intractableness of their disease.”
(Many of us with T1D would disagree with him there, finding that Low scene eerily realistic and worth a shudder every time we see it.)
In the chapter dealing specifically with JDRF, Bennett is critical of the org’s use of children to pull on the heartstrings of the public about the seriousness of diabetes. While it is admirable that every two years the JDRF Children’s Congress takes hundreds of T1D kids to Capitol Hill to share their stories and urge lawmakers to fund diabetes research, Bennett finds the org’s rhetoric overall to be too negative, divisive, and even exploitative at times.
He criticizes this, while calling for a balancing of “inspiration porn” in diabetes — the overuse of “positive” stories about ill people that can end up making others in their community feel embarrassed or demoralized. That also spills over into the following chapter focused on U.S. Supreme Court Justice Sonia Sotomayor, who has lived with T1D since childhood and who has served as a role model for many in the community.
“We’re very used to seeing these kinds of stories, where even the seemingly most disadvantaged of people can overcome diabetes with sheer force of will. These narratives need to be scrutinized, if not outright retorted. The jump from poor management to poor morality is just such a toxic concept,” Bennett notes.
The chapter “Cyborg Dreams” was also fascinating, in addressing how technology and treatment options have progressed and how the conversation around these tools has shifted through the years. It’s now almost frowned upon if someone is resistant to wearing the latest gadgets or using the newest apps.
And while it’s not as novel as it once was, this book references the Diabetes Online Community (DOC) many times — highlighting the importance of peer-to-peer discussion about the everyday challenges we face.
“The parlance of diabetes management is a composite structure, not a monolith, and for some their resources for instigating change lie in their experiences… if only someone will listen,” Bennett writes.
“I was diagnosed in the weeks after I completed my PhD in Communication and Culture from Indiana University. It was June of 2004 and I was 29 years old, just four months shy of turning 30,” Bennett recounts.
“I discovered I had diabetes because I went into DKA and had to be hospitalized. I was looking for a place to live in Columbus, Ohio, in anticipation of my first job post-degree and had to rush back to Bloomington because I was so sick. It was a very long three-hour car ride back.
“The diagnosis was especially unusual because I had no family history of T1D, though plenty of people in my family have lived with T2D, including my grandmother and great grandmother. I have a very large extended family and I can’t think of another person who has lived with T1D.
“Oddly enough, I wrote my dissertation on blood symbolism and policy. The dissertation, which became my first book, examined the
“So my focus on health was a natural tie in to the work I would eventually perform on diabetes. But so much of the queer theory I was reading at the time examines the way certain perceptions become naturalized as ‘normal.’ Normative conceptions of the body are a huge part of both books and I’ve always viewed the two as companions of one another rather than two radically different projects.”
“I’m a humanist and at the end of the day I really want people to recognize that diabetes is not simply a medical problem — it’s also a cultural problem,” Bennett tells us.
“Diabetes is brought to life not just through medical encounters or heuristics; it’s also enlivened by the way we talk about it, the way we approach it through policy, and the way we engage with it politically. I’m constantly struck by the random ways diabetes is understood and misunderstood.
“And the idea of ‘management,’ while essential to life with diabetes, sometimes does a disservice to the complications that accompany the disease. I’m especially suspicious of unreflective management frames that stress individualism or hard work or better control. If a person can’t afford insulin, that’s a problem of capitalism, not individualism.
“As I mention in the first chapter, I really started writing the project because of the things people were saying to me at the time. On the one hand, everyone said that it was a relatively easy disease to manage. I was diagnosed after the creation of Lantus (long-acting insulin) and there were, of course, more technologies than ever before to help me stay well.
“But people also recounted, almost obsessively, those they knew that had died from the disease. The schism between the ease of management and the inevitable fate that awaited me were hard to reconcile (and left me pretty despondent when I realized that control was actually more evasive than people told me it was).
“As someone who has long studied communication, I landed on the idea of ‘management’ as this very complicated term that people often relayed as self-evident. I don’t think it is and the book looks to the ways the term ‘management’ is used to cover over the many problems that accompany life with diabetes.”
“One of the things I would tell people without diabetes is to be careful with the kinds of information you are sharing, even if you’re well-intentioned,” the author says.
“For example, I see so many good people sharing information about so-called Walmart insulin but I really worry that we’re putting the onus on people with diabetes to adopt an antiquated form of insulin without realizing what an awful position that puts them in. And again, it reproduces this individualized notion of diabetes — the notion that if you don’t make this choice, then it’s your fault and not that of opportunistic pharmaceutical companies.”
So what can PWDs do with all of this information about society’s views of our illness?
“Just keep sharing your stories. We need more discourses about diabetes that disrupt the typical narratives that people without diabetes are used to sharing,” Bennett says. “It’s so easy to render this disease private (think of all the pump literature that stresses discreetness) and we really need to be more public and show how multifaceted the disease is.”
He also lauds the recent explosion of grassroots diabetes activism as “heartwarming,” pointing especially to the ongoing efforts of organizations like T1International (which came to his attention only after the book was finished). He loves to see the vast number of activists on Twitter who are sharing information and supporting one another, and those who are hacking diabetes equipment to make closed-loop systems a reality.
“There’s so much that’s happened even after my book was published, I feel like I’m learning something new every day!” he concludes.
Without further ado, here’s your chance to win a copy of the book for yourself…
Interested in winning a free copy of Jeffrey A. Bennett’s new book on the “Cultural Politics of Disease”? We thank the author for helping us give away a copy to one lucky reader. Here’s how to enter:
1. Email us at firstname.lastname@example.org with “DM-CulturePolitics” somewhere in the subject line to let us know you’re hoping to win. Or you can ping us on Twitter or our Facebook page using the same codeword. For shipping purposes, we must limit the giveaway to those with mailing addresses within the United States.
2. You have until Friday, Feb. 21, 2020, at 5 p.m. PST to enter.
3. The winners will be chosen using Random.org.
4. Winners will be announced on Monday, Feb. 24, via social media, so please be sure to keep tabs on your email / Facebook / Twitter messenger box, as that’s how we contact our winners. (If winners don’t respond within a week, we select an alternate.)
We’ll update this post to announce the winner.
Best of luck to all!
This giveaway contests is now closed. Congrats to Lee Ann Tincher in Indiana, who was chosen by Random.org as winner of this giveaway!