The individuals whose stories were reproduced were all middle-aged or elderly.
We do not know anyone’s sex or race, except for one person who identified herself as a “Negra.” With the exception of one fifty-three-year-old who had had diabetes all his or her life, everyone had developed it as an adult.
None was able to work; most had additional health problems, including kidney disease, arthritis, high blood pressure, and glaucoma.
A few had suffered leg amputations, and several had difficulty with their vision.
In response to questions about problems they had encountered because of economic hardships, the interviewees shared stories of missing doctors’ appointments because they had no means of transportation, receiving the wrong kind of insulin at the pharmacy, or being refused insulin altogether.
One woman explained that she failed to make an appointment because she had become ill and “wasn’t able to go down to catch a bus.” Another described having to travel 150 miles to the clinic because there was no medical facility closer to home.
That person lived alone and had to take two buses and a streetcar to get to the clinic.
Others talked about the expense of following the prescribed diet.
Most received Medicaid or Medicare.
Almost everyone had been waiting at the clinic for four hours or more without yet having seen a doctor.
Several were illiterate.
The inclusion of these nine stories in the commission’s report was a way of making the plight of the poor visible to members of Congress. Yet by placing them at the end of the second volume of the commission’s report, and separating them physically from the five hundred pages of testimony delivered during the hearings, the report drove a wedge between those who were poor and others with diabetes.
This gap was widened even more during the public hearings by the overwhelming focus in the testimonies on the juvenile form of diabetes.
Many of the individuals who turned up to tell their stories or who sent in letters either had this form of diabetes or were parents of those who had it.
A good number were also affiliated with the Juvenile Diabetes Foundation, which had been established in 1970 in order to find a cure for juvenile diabetes.
Its founder, Leatrice (Lee) Ducat, who served on the eighteen-member National Commission on Diabetes and helped write the report, had become frustrated with what she perceived to be the American Diabetes Association’s excessive concern with education, outreach, and training, and its concomitant lack of interest in research.
To remedy this, she had started what turned out to be a rival organization, consisting primarily of parents of children with diabetes, who viewed the nation’s conquest of polio as a model.
Members of this organization turned out in droves to the public hearings and bombarded the commission with letters.
One in particular, penned by the president of the Juvenile Diabetes Foundation’s Washington, D.C., chapter, could not have been clearer about the organization’s mission when he declared that “the single, overriding, most important problem in Diabetes today, is the long-standing neglect of research, not education, not training, not publications, not screening programs, but research.”
In 1976, three years before the official division of diabetes into IDDM and NIDDM, an emphasis on finding a cure for “diabetes” might have implied that everyone would benefit, regardless of the form they had.
But that was not the way the testimonies played out.
Instead, there was palpable tension in the words of parents of diabetic children who feared that funds would not be appropriated in ways that might most directly help their children and, perhaps, grandchildren. “I ask you to separate the problems of the juvenile diabetic from that of adult onset diabetes,” wrote one father, as he described the devastation that had visited his family since his fifteen-year-old son had been diagnosed with the disease three years earlier. “The problems are vastly different,” he explained.
He understood that everyone who suffered from diabetes needed help, but he was also clear that his “main concern” rested with the “juvenile diabetic.”
Even those who seemed more sympathetic to people with the adult form ended up dividing those with diabetes into two types.
This is evident in the testimony of Leo Krall, one of the head physicians at the Joslin Clinic, who emphasized that only a small number of the five to ten million people living with diabetes in the United States suffered from the juvenile form.
The rest, he argued, could not wait “for the miracles and cures of the future”; what they needed today was to learn how “simply to survive and perform [their] normal daily functions.” Krall was especially concerned about spreading this knowledge beyond the handful of institutions that served those with financial resources, pointing out that diabetes did not “confine itself to ethnic, education, economic or psychological boundaries.” Yet despite stretching across these boundaries, Krall ended up erecting other walls in the way he characterized the challenge of educating the growing number of people with diabetes.
The “old classical Chautauqua lecture method” no longer worked, he explained, because it was “geared to the motivated, Anglo-Saxon oriented, high school level educated person.” In contrast, they were trying to educate “the masses who not only do not know what is available but also do not know what they do not know!”
The commission’s report thus effectively created two different groups.
On the one hand were children (and their parents), whose stories filled the pages of the report.
Their pleas were not only for a cure, but also for an end to stigma in school, at the workplace, and in social settings.
They wanted the chance of having a “normal” life, one not dependent on needles and restrictive diets, one free of the complications that seemed inevitable and that might prevent them from getting married, having children, even grandchildren, and living long lives.
On the other hand were, in Krall’s words, the “masses,” whose stories were largely absent from the testimonies, with some exceptions.
One physician spoke up on behalf of Asian Americans; an American Indian wrote of the hardships and health problems that his people endured on reservations; and there were, of course, the nine testimonies included at the end of the volume, all of whose authors were poor and, in the case of at least one, black.
But their voices were drowned out by the hundreds of testimonies, largely from middle-class whites, that dominated the report.
Reading through the commission’s report, it becomes clear that poverty and race are both there and not there.
They are present in the demographic data mentioned in the beginning of the report and in the testimonies included in the end.
Throughout the rest of the report, however, they are invisible.
There was certainly little in what the commission labeled its “Long Range Plan to Combat Diabetes” that suggested an interest in tackling the fundamental causes of poverty and racism.
Instead it turned to medical research, education and outreach, and translation practices.
The clear articulation of a national program for addressing diabetes, which not only ignored both the demands of radical health activists and the measured approach of black physicians like Richard Williams, but also appeared indifferent to the concerns that had informed the civil rights movement and Johnson’s War on Poverty, reveals much about the emerging political climate in the late 1970s. The War on Poverty may not have done much to redistribute wealth, but it had been an important step in funding government programs designed to help people suffering from poverty, disease, and malnutrition. Committed to finding a middle road between blaming individuals for their problems and condemning the nation’s political and economic structures, reformers had focused on creating opportunities rather than attacking inequalities.
Still, by the late 1970s even this middle road had become the target of increased criticism.
Between the high costs of the Vietnam War, the 1970s oil crises, and the gradual deindustrialization of the nation’s primary employment sectors, the U.S. economy had taken repeated hits and the financial optimism of previous decades had begun to fade.
The economic downturn, alongside massive increases in health care expenditures, which were claiming an ever greater percentage of the nation’s GDP, led to cost-saving measures that harmed poor minorities disproportionately.
Outlays for health services also triggered a political backlash: Ronald Reagan would eventually be swept into power in 1980 by riding a wave of opposition to “big” government (as far as social services, not the military, was concerned) and by fueling racist sentiments.
For health care, this meant a switch from a vision of government as providing an essential safety net for those in need to a vision of informed individuals taking responsibility for their own health.
By 1980, anyone who kept up with the news knew that diabetes had become a major health problem for the nation.
Those who read past the headlines might also have learned that mortality and morbidity rates were highest among minorities, and that women were more affected than men.
But after that, the message lost focus.
Careful readers might have come across claims that the disease struck those living in poverty the hardest, although this did not receive much attention in either the popular press or in professional journals.
The reasons for such disparities were also quite difficult to pinpoint, with the exception of the literature on Native Americans, which favored genetics.
Otherwise, the tendency was to mention increasing rates of obesity and family history (or heredity), and to emphasize the importance of encouraging behavioral changes.
Only the rare voice suggested that poverty and racism played a role.
The picture of diabetes became even more complicated in the 1980s.
As a result of a second major wave of immigration, largely from Mexico and Asia, the image of the populations considered most susceptible to diabetes grew increasingly diverse.
No longer did the claim that minority populations suffered disproportionately from diabetes refer primarily to Native Americans and African Americans; Hispanic and Asian Americans were joining the mix.
And as the number of ethnic populations believed to be susceptible to diabetes increased, the number of different explanations for its exponential rise grew as well.
Genetics, obesity, acculturation, nutrition, and even stress were frequent contenders.
Poverty and racism, however, were seldom considered serious and legitimate contributors to the forces driving up diabetes rates.
Mexican Americans as a “Diabetic Race”
“The number of recent immigrants to the United States is greater than at any time in the past century,” wrote the authors of a paper on cultural differences and nutrition.
The year was 1983 and the immigrants to whom they were referring were not European, as they had been at the beginning of the century, but Latin American and Asian. They were part of a second wave of immigration to the United States that had begun in 1965, when Congress passed the Immigration and Nationality Act, thereby repealing the national quotas it had put in place four decades earlier.
Doubling and tripling in number every generation, the new immigrants came to the attention of health providers, who struggled to care for individuals who hailed from cultures quite different than their own. For those interested in research, however, these often self-contained communities promised new opportunities to explore the fundamental causes of disease.