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In the spring of 1992, as the contentious Democratic primary ground to a close, Bill Clinton was speaking at a rally in New York City when an AIDS activist accused him of ignoring the ongoing HIV epidemic. Uttering four words that epitomized his campaign style, Clinton told the activist, "I feel your pain."
Clinton's remark was widely mocked by conservatives who believed that bleeding-heart liberal policy, under the pretext of compassion, was creating a culture of dependence. In his new book, Pain: A Political History, Keith Wailoo argues that over the past 60 years, sparring over what constitutes pain, who can judge pain, and how the government should mete out treatment has elevated our maladies into fraught political concerns. Pain resists measurement, raising questions about whether sufferers can be trusted to evaluate their own distress. Conservatives worry that chronic pain is a symbol of underlying social maladjustment, while liberals seek to put the means of relief into patients' hands. Should pain count as a disability? Does relief encourage fraud and addiction? Wailoo, the Townsend Martin Professor of History and Public Affairs at Princeton University, contends that the politics of pain has morphed beyond rhetoric into an enduring partisan divide.
In 2010, Melanie Thernstrom wrote about physical suffering in The Pain Chronicles, a book that is simultaneously a memoir of her own experience of chronic pain, an exploration of the scientific foundations of pain, and an expansive record of pain's cultural meanings. She explores the paradox of pain: Impossible to articulate, it is a defining and unifying element of humanity. "Pain is the most vivid experience we can never quite describe, returning us to the wordless misery of infancy," she writes. Whose pain is real-and whose pain can be cured-are questions that have reverberated for generations.
Wailoo and Thernstrom's exchange has been edited for concision and clarity. -Amelia Thomson-Deveaux
Melanie Thernstrom: Your book traces the evolving politics of pain, suffering, and disability-how we as a society evaluate people's pain, whether it's real and worthy of treatment and social support, beginning with the story of wounded veterans from World War II. How do we think about pain in a political sense? What is the "liberal" or "conservative" attitude toward pain?
Keith Wailoo: You can begin to understand that divide through caricatures that have developed over the years. Liberals believe in compassion toward others-they believe that subjective claims about pain ought to be taken seriously and endorse broad-minded approaches to relief. Conservatives believe in stoic, grin-and-bear-it approaches to pain. They believe people should push through pain despite discomfort in order to get back to work. They also tend to critique this bleeding-heart, overly compassion--oriented society as lacking objective criteria for judging the pain of others, which leads society in a terrible direction of increasing dependency and welfare. To some extent, these caricatures hold up. Liberal eras like the 1960s and 1970s did produce innovations like patient--controlled analgesics, which essentially said, regardless of whether you believe a patient is in pain, just hand them a morphine drip and have them determine what level of relief they deserve. But then sometimes they don't. You have President Dwight Eisenhower, who's a Republican and signs the first disability act within Social Security in 1956. Or you have President Jimmy Carter's attempts to roll back the growth of disability benefits.
It's a hard issue because pain is such a subjective state. Often, there are no objective criteria to tell how much pain someone is in. But most health-care providers will tell you that you have to approach patients in good faith. You write about how under President Ronald Reagan, there was a vast purge of the disability rolls because of the perception that many of the people who were receiving disability were cheating. The fear was that people were fabricating pain instead of working, because they could be paid almost as well for staying home and being disabled. It seems like the best way to address pain-related disability is not to focus on eliminating fraud but to think about how best we can treat the pain itself. Some pain, of course, isn't treatable, but other forms of pain can improve or even be eliminated. Some of the people I interviewed for my book had this catch-22 that they couldn't work unless their pain was treated, but they couldn't afford health insurance without working. You'd think that this is exactly what Medicaid should be able to address, but in some states, Medicaid has been designed so that it's not enough to be poor. You also have to have a minor in the home. So there's this social message that poor people's pain and suffering doesn't matter unless they're parents.
Some of what you're talking about is happening on the clinical level, too. Over the course of the last 50 years, physicians have internalized anxieties about drug addiction and the overuse of painkillers, with OxyContin as the most recent manifestation of that. Physicians are under surveillance because of these political concerns that carry over into criminal justice, and they routinely undertreat their patients as a result.
That doesn't seem like it's a wholly bad thing. Painkillers come with a tremendous cost. There are many harmful side effects, and the research shows that there are other modes of non-drug pain treatment like physical therapy that are more effective-they're just more expensive and time consuming for the doctor. So if the goal were actually to help people in pain, then non-opioid solutions should be the focus of pain treatment. But if politicians-mostly conservative politicians-don't want to spend a lot of money on health care, then you get a system where patients, and especially poor patients, can't get a more effective treatment.
I agree that paying more attention to the actual people in pain would be a first step to resolving these problems. In politics, the issue of pain takes on a life of its own when liberals caricature conservatives as lacking compassion and conservatives see liberal "I feel your pain" policy as flawed. The debate increasingly moves away from people's experience. It needs to be reconnected to these questions of experience.
Your book has done an extraordinary job of laying out those complexities. I was reviewing it, and it seemed to me that on every other page, I found an observation that pivots from the world of people in pain to the world of the politics of pain. At one point, you say that pain brings out the best and the worst in people. You mean it to describe the experience of living with pain, but politically, that's also true. It produces extreme compassion but also extraordinary skepticism and judgment.
And that makes sense, those connections, because pain is one of the most salient and terrible facts of human life. I became fascinated with ancient Mesopotamian writings on pain when I was researching my book, and although we now often read religious texts about pain as spiritual and emotional, it's clear that when you look at these writings, they're obsessed with physical pain. There was a Babylonian god of toothache and a demon of stomachache. Trying to figure out how we should cope with pain is just so central to human life. It's also a mirror for larger social attitudes. In the Victorian era, there was what could be described as a "great chain of being," where the highest members of society-like upper-class women-were considered the most pain sensitive. At the bottom of the chain, slaves and Native Americans were thought to be insensate. Current studies show that minorities' pain and women's pain is still undertreated, even when they have the exact same complaints that men or white people have. It's still society saying whose suffering matters to us.
Yes, it evolves with the times. In the 1950s, after Alaska became a state, there were questions about Eskimos and how they feel pain. There were these dramatic stories in the news-which are obviously apocryphal-of how people living in the wilds of Alaska could cut off a gangrenous foot without any anesthesia. Then in the late 1960s, there was an ethnography of patients in a veterans' hospital called People in Pain. On the one hand, it's a wonderful book pointing out that Jews and Italians and Irish and Anglo-Americans all talk about pain differently. It may also be read today as the crudest form of ethnic stereotyping. Jews tend to complain about pain. The Irish are very present-oriented in their pain-that is, if pain is present, they feel it, but as soon as it goes away, it's as if it didn't happen. And of course the Anglo-Americans are the classic stoics; that is to say, they rationalize pain, they think about it intellectually. They're considered to be the best patients because of that.
One interesting reversal from the stereotypes-that liberals are compassionate and conservatives aren't-that you write about in the book is the conservative notion that a fetus can feel pain during an abortion. It's hard to believe that this position can get anywhere, because there's a strong scientific consensus that a fetus doesn't experience pain in the way that people do. The parts of the brain like the limbic system that allow humans and other higher mammals to generate an experience of pain and suffering haven't developed in a fetus.
So much of the discourse surrounding pain has limited scientific foundation, and the question of fetal pain is one of the best contemporary examples. That contention-that the fetus feels pain-is extraordinarily politically powerful. In conservative religious states, part of the effort to roll back access to abortion involves these requirements that women be told that the fetus can feel pain before they can proceed with the abortion. In the book, I explain where the idea of fetal pain originated. It goes back to the Reagan years. A film released in 1984 called The Silent Scream argued that the fetus screams-and feels pain-during an abortion. It's that political contention that drives the fetal-pain debate. Certainly based on what we know about fetal development, neurological development, and the physiology of pain, there is no scientific basis for this claim. But little of this cultural politics of pain revolves around actual science. Here was a president who was being bashed by liberals for ignoring people in pain, and this allowed him to say that he did feel compassion for a particular class of "person" and a particular kind of pain. It became an important and effective political argument regardless of the scientific underpinnings.
There is a paradox here. Pain is the No. 1 complaint that brings patients to the doctor, and yet it's still marginalized as a field. Why do you think that is?
Part of the problem is that pain cuts across disease categories. We divide up the problems of health into organ systems or particular ailments; we don't think about disease according to the experience that people have. It exemplifies how widespread the problem is but also how difficult it is to gain any attention for people in chronic pain, because pain is embedded in so many different illnesses.
You talk about Rush Limbaugh in the book-how this influential conservative commentator claimed to have severe pain and became addicted to pain medicine. It seems like it could have been an opportunity for a conservative to shed light on the problem.
That's a great question. What happens if you have a conservative who believes in deregulation-who frequently criticizes this kind of "bleeding heart" attitude-become dependent on drugs? It's especially interesting because with OxyContin, you have one of the places where liberal/conservative divides start to break down. People who were interested in broadening the scope of relief and people who wanted more deregulation embraced the rise of prescription painkillers that became so central to the national conversation we had about OxyContin-it's a world liberals and conservatives made together. When Limbaugh first admitted he was addicted to OxyContin, there was a hope, mostly articulated by liberals, that he might become a voice for people in pain. The hearings surrounding his case reveal some of the nuance. But on the radio, he framed it very much in keeping with the conservative script-as a problem that he overcame. Then he moved on.
So what is the answer? Can we hope for improvement in pain treatment and pain management? The Affordable Care Act originally included funding for pain-treatment education, but then Congress slashed that funding. All that was left in the bill was the money to commission a report on pain by the Institute of Medicine at the National Institutes of Health. I was one of the authors of the report, and we concluded that there needs to be sweeping change on the research and the treatment front because pain is both poorly understood and poorly treated. That report, not surprisingly given the political climate, didn't get much traction. What do you think has to happen to translate those recommendations into action?
One possibility for change comes simply from the continuing aging of society. Chronic pain is inevitably associated with many degenerative diseases, and that means that pain will only rise in prevalence and importance. To be honest, I think we came very close with that provision in the Affordable Care Act. We could have created a kind of public-awareness campaign, akin to what you might find with AIDS awareness, to begin to shape the national conversation about the character of chronic pain. When the funding got cut, that was a missed opportunity to have a public dialogue about these issues, perhaps a "pain summit" with the goal of depoliticizing pain care. Because I'm also concerned that physicians continue to be woefully undereducated about this issue.
It seems like physicians would be a great potential audience for your book.
Yes, if there's one thing I think we should start doing, it's pushing medical schools to embrace a more robust and sustained commitment to actually teaching doctors about pain as a widespread health problem. In the absence of a stable medical and scientific base, it's likely that pain will continue to be politicized. Of course, it would be valuable for politicians, policy-makers, and people living in pain to understand the political battles that often make relief so hard to find.
