David Spero, RN
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Diabetes as a Social Disease
"I guess diabetes is a bunch of family curses, that is how it started… Like, my momma had it, father got it, and you know, all of us just got a curse on us. If it runs in your family, you will wind up getting it." -- Monique, age 48, Charleston, South Carolina
A tidal wave, a flood of diabetes is sweeping over the world. It afflicts over 200 million people, an increase of almost 400% in the last 30 years. It cripples communities. It bankrupts health care systems. About 10 million a year die from it (more than from AIDS). Even more suffer amputations, blindness, kidney disease and other forms of disability. It’s getting worse: about 400 million more are pre-diabetic, on their way to full-blown illness.
And they’re blamed for it. Most doctors and health writers would agree: type 2 diabetes (T2D – 90% of all cases) is a genetic curse, the result of bad behavior, or some combination of the two. The blame for diabetes falls entirely on the person who has it. Either you’re doing something wrong, or there’s something wrong with you.
But diabetes is not something people do to themselves, and it’s not a curse. It’s not something that just happens. T2D is a social disease Not social in the old sense of "sexually transmitted," but in the reality that society itself has the disease. Individuals get the symptoms and pay the price, but the environment is sick – toxically high in stress and sugar, low in social support, opportunities to exercise or to feel good about ourselves. The environment in modern society will give people diabetes, if they lack the power to fight it off or change it.
With any flood, it’s the people of the lowlands who get soaked the worst. In the developed and increasingly in the developing world, it’s the people lowest on the social and economic ladder, the ones with the least power, who get the most diabetes and suffer the most complications. (With one exception -- poor people in the poorest countries don’t get diabetes, because starvation prevents diabetes.)
But as an old African saying goes, "When it’s raining in the valley, it’s snowing on the mountain." The diabetes flood reaches far beyond the poor communities where it does the most damage. All over the world, indigenous people, people of color, and poor people are drowning in a toxic sea of sugar, stress, inactivity and inequality. But the same poisoned environment puts people of all classes and colors at varying degrees of risk for diabetes.
T2D is just one of many socially created diseases. Most chronic conditions, including heart disease, asthma, and much mental illness fall into this category. Yet few medical authorities acknowledge the social determinants of health or recognize the crucial corollary. If diseases are socially caused, then treatments and prevention efforts must be social. Telling individuals to handle T2D and other conditions on their own, demanding they resist the toxic environment without support, is a strategy for sickness. Only the drug companies benefit.
This book reports the social causes of T2D and chronic illness and outlines some needed social responses. The first section explains who gets diabetes and why, and who profits from it. The second section deals with building personal and social power to protect our health and change the environment.
And Chapter 4 describes the role of the medical system, for good and ill. In the U.S.A., we have a two trillion dollar medical system that ignores the social causes of illness. They focus almost entirely on genetics, biochemistry, and other avenues that lead to drug therapy as the primary solutions. These therapies don’t work very well – no diabetes drug except possibly insulin is as effective as exercise. They distract from what really works – building capacity for self-care, empowering communities and creating a healthier environment. To see how skewed the medical approach to T2D is, let’s take a quick trip to the Arizona desert.
"The Most-Studied People in the World"
Ground Zero in the diabetes epidemic is in Southern Arizona’s Sonora Desert, near the Gila River. The Pima Indians there have the highest rates of T2D in the world, as high as 70% among adults. These numbers have brought carloads of scientists to the Pima’s beautiful highland desert home. Being studied by squads of young university researchers has become a significant part of the Pima’s life and economy.7 Western science hopes to better understand diabetes by focusing on the sickest people. Millions of dollars have been spent. In the words of Dr. Ann Bullock, a Cherokee physician, the Pima are "the most studied people in the world."
But it’s mostly wasted effort, because they’re looking in the wrong place – at the patients, not at the environment. Of around 500 published Pima/diabetes studies indexed on PubMed, the U.S. government’s medical research database, more than 60% focus on genetics. (Sample title: "Association of a promoter variant in the inducible cyclooxygenase-2 gene (PTGS2) with Type 2 diabetes mellitus in Pima Indians.") Most of the others deal with connections between genes and body chemistry. Only a handful concern treatment, and only three focus on behavior change. None deal with the Pima’s history, economy, or the cultural strains they are under.
Way down the line, this genetic research could possibly lead to some new drug therapies, maybe even some that are slightly better than what we have now. Somebody may make a lot of money. But it misses the point. Genes don’t contribute as much to T2D as other factors, especially the environment and lack of power.
I’m not denying that genes are important in health and T2D. They are. (Some studies of identical twins have found that, if one twin has T2D, the other has a 90% chance of getting it.) But their role is often overstated and misunderstood. It is highly misleading to say that the Pima have an unusual genetic risk for diabetes. Before the Europeans came, diabetes was virtually unknown among Native Americans! There is no word for diabetes in most traditional Native languages. Even in 1933, a Dr. Hancock of the Indian Health Service reported seeing exactly one case of diabetes among Native Americans in two years of work in Arizona! And Pima in Mexico, with the same genes but a more traditional lifestyle, have low rates of diabetes, the same as their non-Pima neighbors.
What the Pima have is an intolerance of the modern American way of life – especially the concentrated carbohydrates and the lack of physical activity – and a history of trauma most of us couldn’t imagine. What they have is a lack of power. The American diet (and a very poor version of it at that) was imposed on the Pima at the same time that they lost their land, their freedom, and their way of life.
For 2,000 years, they had been successful farmers, hunters, and weavers. In the late 19th century, American farmers settled upstream from the Pimas and diverted their water supply, according to Dr. Eric Ravussin of the National Institute for DDK, and much of their traditional means of living went with it. They became much less physically active or economically viable. Their culture was suppressed and their families broken up under government programs to raise Native children in boarding schools.
For this genocidal trauma, they were compensated with high-sugar, high-fat welfare food and access to television, a trade that has happened to conquered people all over the world. You lose your self-determination, your culture, your job and your hope, but you do get TV, Big Macs, Cokes, and Type 2 Diabetes.
Few people have genes strong enough to protect against the kinds of economic, social, psychological and spiritual injuries that the Pima have suffered. Few could cope with such a toxic physical and psychological environment. As we’ll see in Chapter 2, all those injuries have direct physical effects. They’re stressful; they cause insulin resistance and high blood pressure. They make it more difficult to live a healthy life or find reasons to do so.
True Causes of T2D
The Pima are an extreme case, but they’re not unique. Many people with diabetes or pre-diabetes have experienced these kinds of injuries, although usually to a lesser degree. They are forced to live in an environment that causes disease, denied the social and psychological resources to resist the environment, and then they’re blamed for it.
You or people you know may be in this situation. In the U.S.A. and Canada, most Native nations, most African-Americans and many Latino communities have faced such historical trauma. They have very high diabetes rates, as do some low-income Whites, and Southerners. T2D is often a very accurate gauge of where a group ranks in society. In general, the less power, money, and status a group has, the more T2D it will have.
The same is true for individuals. Having less money leads to more diabetes. Less education leads to more diabetes. Unemployment seems to cause diabetes. All these things are aspects of having less power. Trauma can also rob you of power by damaging your self-confidence and taking away your sense of safety. Being an abused child or growing up in an insecure home, the death, jailing, or substance abuse problem of a parent, all these put you at risk for diabetes. Soldiering is often traumatic and predicts diabetes. Military veterans have more than twice the diabetes rates of non-veterans.
The pathways from difficult lives to diabetes are still being explored, but stress and powerlessness play major roles. Stress is a major contributor to diabetes (and other conditions), and power is its most important treatment. Chronic stress contributes to diabetes directly through the action of stress hormones, and indirectly through its effect on behaviors. Stress is not evenly distributed through society – people with less power have more stress, and high rates of illness go along with high levels of stress. Chapter 2 explains these effects in detail.
Stress isn’t the whole story, of course. The availability of healthy food and opportunities to exercise play a big role, as do motivational factors: self-confidence, positive goals and reasons to live. The effects of social environment on diabetes are far stronger than any known gene or behavior, as the experience of two tribes in Southern California will show.
Genes or a Casino?
In the dry, gentle hills of Riverside and San Bernardino counties are two Indian reservations, the Morongo and the Torrez –Martinez, both members of the Cahuilla nation. They come from the same stock, and have lived near each other for hundreds of years, so their genes are mostly the same. Neither gets much exercise. Their diabetes rates should be similar. But, based on health provider estimates, the Torrez-Martinez have almost four times the diabetes rate of the Morongo! How can this be?
The difference is that the Morongo have a casino. While the Torrez-Martinez live in trailers in a desert far from the road, have no money and near-total unemployment, the Morongo have some hope. With a casino, they can send their kids to college; they can get jobs, or buy a truck. As the largest employer in the nearby town of Banning, they are an important part of society. Same genes, different amount of power and resources. (It must be said that, while neither tribe eats a particularly healthy diet, the Morongo get more steak and eggs, while the Torrez-Martinez eat more tortillas, beans and rice. This may account for some of the diabetes difference, but the protein intake, too, is related to their economic status.)
People’s genes haven’t changed much in the 30 years of the diabetes epidemic. Neither the Indians nor anyone else have suddenly turned into a gang of gluttonous hogs, eating themselves to death. What has changed is the environment around food and physical activity. Genes are widely blamed for problems that are more environmental than genetic. Dr. Gabor Mate, author of When The Body Says No, says that blaming people’s genes for their problems "allows us to avoid disturbing questions about the nature of the society in which we live."
People used to think tuberculosis was some kind of genetic weakness. But when housing improved and poverty decreased, Tb became much less common, and when some moderately effective drugs were discovered, Tb almost disappeared. Probably, genes play a larger role in diabetes than they do in Tb, but with positive environmental change, Type 2 diabetes could disappear, too. But that will require a different kind of medicine, one that looks at changing social environments, not just individual behaviors.
Doing it to themselves?
Most people are only dimly aware of the connection between environment, behavior, and health, if they recognize it at all. Recently, I was telling a lawyer acquaintance about the social causes of diabetes, over a healthy salad bar lunch at a trendy restaurant overlooking the San Francisco beachfront. He didn’t want to hear it. "All they have to do is stop eating," he said. "All they have to do is go to the gym. What’s so hard about that?"
It’s a common response – those who don’t blame genes, blame behavior. And behavior is important. People who eat right, exercise, and relax, will probably be healthier, no matter what genes they have or how much stress they’re under, up to a point.
In our society, however, powerful social forces block physical activity and pile on insane levels of stress. Huge corporations work very hard to ensure that we eat lots of unhealthy food. Economic and social demands limit the time, money, and energy we can put into self-care. Many of us, especially those with less power, carry burdens of emotional pain and anxiety that are most easily treated with sugar. We learn unhealthy behaviors before we know better, often before we can speak. And we maintain those behaviors because our environment is set up to maintain them.
To resist this environment, people need social support, adequate resources, self-confidence, knowledge, and sources of meaning – the elements of power. Healthier behaviors around food, exercise, and relaxation are crucial, and they are possible, but only with sufficient inner and outer resources.
Social Diseases Need Social Approaches
This book is not typical medicine. It starts from the truth that the social environment is chiefly responsible for diabetes. People with diabetes aren’t. Health is socially created; disease is socially created. So we need a social approach; working together to change both behavior and environment.
The elements of the social approach are:
Building personal power – self-confidence, self-esteem, positive goals and reasons to live
Building social power – working together in families, communities, support groups, and other sources of social support
Changing the environment – from the individual home to the community to the larger society
This is a public health approach, and it’s practically unknown by modern medicine. Nearly all doctors prefer to study and treat patients one by one. They prescribe drugs and behaviors and hope for the best, but patients rarely get the best results, because the environment is against them. There are too many other demands and too few internal and external resources (in other words, not enough power) to permit successful self-care in many cases.
Looking one person at a time, we can see only genes and behavior. These are important, but when we look at diabetes in groups and communities, we can see causes and cures that remain invisible at the individual level. We can see ways forward for people who, as individuals, seem blocked. Self-care requires social support. Social diseases require social approaches.
The fact is that, in today’s environment, most people probably can’t handle diabetes all by themselves, but they don’t have to. If people work together to care for themselves and each other and to change the environment, they can significantly improve their behavior, their health and their lives. Fortunately, some health care providers and community activists understand this and are developing successful programs like those described in Chapter 7 and 8.
All the social, economic, and political stresses people face directly affect their bodies. T2D, heart disease, and other chronic conditions are often called "lifestyle illnesses." This is wrong. It’s not "lifestyles;" it’s the lives those behaviors are in. "Poor people have worse health and worse health behaviors," says Ann Bullock. "So people think the health comes from the behaviors. But careful studies show that less than 30% of all the excess illness among low-income people comes from behaviors like smoking, drinking, overeating, or not exercising. The rest is stress and the environment."
That means that the solutions to health problems often lie outside of what we think of as health. Such solutions can be social; they can be economic or political or spiritual. Activities that help people gain some control over their lives and give people a more positive sense of themselves, build a sense of support and encourage cooperation, work much better than programs that focus only on health behavior and leave people on their own. Of course, we can combine behavior change with approaches that build power, and can even go on from there and work to change the environment.
The Power of the Social Approach
How many people have started exercising, but haven’t stayed with it? That’s an individual approach, and stopping is what usually happens. As we’ll see in Chapter 7, social approaches to exercise could include anything from getting one regular exercise partner, to going to a gym with built-in support like Curves*, to church-based exercise programs, to hospitals putting on martial arts classes. Or they could go much farther, like a senior/teen joint walking program in a Seattle community, or Alaska Natives re-discovering traditional sports to get people moving, or neighbors holding community safety walks in places where people are afraid to walk alone. Of course, these programs have benefits beyond burning calories. They bring people closer together and build communities’ sense of strength, which can reduce stress in each member of the community.
* Curves gyms have been strongly and probably well criticized for two things – the owner’s support of anti-abortion activism, and the low level of their workouts. But I think they’re better than nothing, and a lot of women have gotten started moving toward health there. If you have a better place to work out, do it.
Similar creative solutions are being applied for healthy eating and stress reduction. Possibly even greater results come from working to change the social environment – such as communities fighting for employment opportunities for youth, or turning local schools into community centers where whole families can learn (and maybe exercise).
Health care providers can and should employ the power of social support – group appointments, classes led by people with diabetes, support groups, mentor programs. All these inspiring programs and more are successfully used in places. Research shows they work, and you will read about them in these pages.
But few people have access to such programs. The social factors get left out of talk about the causes and treatment of diabetes and other chronic conditions. Patients are left to deal with diabetes and other health problems alone. They’re lucky if their families are even involved. Other potential sources of support are usually ignored, while medical science focuses on new drugs of dubious value.
Shame as a Health Hazard
Why are the social causes of diabetes important to know? When people are blamed for their illness, they become ashamed or fatalistic, and these feelings sap their ability to change and take care of themselves. In some communities, the adult diabetes rate is over 50%. This is clearly not a problem of individual behavior! Yet most people with diabetes, in any community, rarely talk about it, even with other diabetics. It’s considered too shameful, or too much a sign of weakness. I interviewed 30 people with T2D for this book, and few had even told their friends they had it. Some swore me to secrecy. They mistook lack of social power for personal weakness. We’ll discuss this more in Chapter 5.
Regina Whitewolf has such a story. "My dad was a national tribal leader," she says. "He traveled to hundreds of tribes. My mother said, ‘your Dad has diabetes, and he doesn’t want anyone to know.’ And we never talked about it ever. He died at 58. When I was diagnosed with diabetes, I said, ‘This is crazy.’ We need to talk about these things. We have to share."
When whole communities are sick, they may feel hopeless and take it out on each other. As Whitewolf says, "we’re oppressive to each other, because it’s safer than dealing with the people who have done this to us." Taking anger out against ourselves doesn’t apply only to Indians. How many people do self-destructive behaviors, or tear down their loved ones, either because they don’t know the social causes of their problems, or feel those causes are too powerful to face?
Shame is unhealthy. Self-confidence heals (Chapter 6). Focusing on environmental and social factors does not make anyone a helpless victim, or deny our responsibility for living the healthiest life we can. But effective self-care is only possible if the social environment can be made to support it. Social approaches and individual approaches go together. What helps one person, especially what one person does for himself, tends to help the group, and what helps the group helps each individual.
I believe that when people come together around health issues, we will have a force that can change the toxic environment. Focusing on individual treatments, behaviors, diseases and risk factors solves little. In the case of overweight and diabetes, researchers Philip Leach and Robert James write, that the average body mass index (BMI – the ratio of weight to height) of the whole population is "by far biggest factor in individual BMI and prevalence of obesity…"
To improve health, we have to change the environment. As legendary sociologist Leonard Syme of UC Berkeley says, "Even if you help one person (with health interventions), a hundred more are right there to take their place." But it is not necessary to wait for sweeping changes in society, either. Friends, families, neighbors, churches, people with shared interests and needs can all help create better social environments and healthier lives.
Significance Beyond T2D
Most chronic illnesses – T2D, heart disease, cancer, arthritis, and the rest – are more common and more severe in people with less power, money, and social standing. The same social approaches will help most of them. Physical and mental illness, substance abuse, domestic violence – all follow the same patterns. As Dr. Ann Bullock says, "When you prevent one problem, you prevent everything."
This book does NOT teach the details of diabetes self-care, although there is a 1-chapter "Self-care Appendix" at the back. If you have T2D and want to learn more after reading the Appendix, you will need a diabetes educator, doctor, nurse, or other books. (I recommend some in the resource section.) But you will get an understanding here of the social dynamics of health and self-care that will help in any condition.
The factors creating toxic stress, toxic food, inactivity and inequality have profound environmental and social effects. The car culture that inhibits exercise also causes pollution. Mechanized agriculture based on petroleum fertilizers and massive monocultures produces huge amounts of sugars and refined grains, but it also destroys our farmland. Diabetes is an ecological and political issue, too.
Diabetes matters for more than the damage it brings millions of people. Its causes (such as corporate control of food, transportation and culture, rampant inequality, weakened communities, and excessive materialism) are among the causes sickening the world. As a disease of powerlessness, its treatment and prevention are based on what people need in all aspects of their lives: empowerment, conscious living, a fighting spirit, and the ability to love themselves and love each other.
Some of the ideas in this book may seem radical or difficult, but they are all backed up by solid science and explained in understandable ways. There may be more science than you want to read. Feel free to skip those parts if you want. If you want more science, see the "Chapter Notes and References" section at the back. Now I want to take you on a tour of the toxic environment, starting with an exploration of stress as you’ve probably never understood it before.