To be in chronic pain is, in the United States, to be considered a potential criminal first and a patient second. This criminalization of chronic pain—exacerbated by the so-called “opioid epidemic”—points toward potential solidarity between chronic pain activists and prison abolitionists, especially given the overlaps between the medical–industrial and prison–industrial complexes.
The CDC’s 2016 policy on opioids created national panic among doctors—and undertreatment or denial of care for people in pain—even though the CDC subsequently altered the policy and cautioned against the panic it exacerbated. But it did not create that panic, which long preceded it. Since I was first diagnosed with rheumatoid arthritis in 2009, I have faced more concern from the medical establishment about whether I am abusing opioids than whether my pain is adequately managed. My first visit to a specialist focused on whether I was taking too many pain pills—they had all been prescribed by other doctors—and whether I was “med seeking,” rather than what could be done about my pain. Like many pain patients, the rudeness and scrutiny about whether I have an addiction—the constant urine tests and lectures and suspicion—make me only seek prescription pain relief when I am at my wit’s end.
Most of us with chronic pain have our meds restricted or policed, and are sometimes forced to undergo a “forced taper,” which means that all pain treatment is stopped. The underlying perspective seems to be that it is better for a pain patient to commit suicide or resort to street drugs than to become “addicted” to prescription opioids—even though the vast majority of chronic pain patients treated with opioids are not addicted but are instead chemically dependent, in the same way I’m chemically dependent on coffee. This anti-drug hysteria has reached such a fever pitch that people dying of cancer, with months left to live, are denied relief because their doctors are more concerned with avoiding chemical dependence than agony.
Today I bristle at the phrase “opioid epidemic” because it buys into a sensationalism created by those who saw a crisis of addiction only when it began to affect white people. And the envisioned solution is a crackdown and criminalization rather than any move toward federal support of addiction treatment. The phrase “epidemic” implies that swift and quasi-military action must be taken, that treatment must be forcefully delivered from without. It implies that the person affected has a disease of such life-threatening proportions that they must be quarantined—that they are a danger to others, a contaminant. Whatever word occurs before the word “epidemic” is the enemy.
Opioids are not the enemy, though: They are a reasonable treatment for people in pain. But because they have become criminalized, many doctors no longer consider them as an option, instead allowing the carceral state to force the medical decisions of millions of people.
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Because of this hysteria, many pain patients may self-righteously bristle, “I’m not an addict!” when denied treatment for pain. I myself was long in this camp; this is a response caused by medical trauma. But the self-righteousness of it ends up reinforcing the stigma of addiction. We pain people often see ourselves as innocents, virtuous and deserving of help, and we seek to make this distinction to underline the fact that we are not the problem.
So I insisted, “I’m not an addict.” I was treated like one, nonetheless: I experienced the indignities of repeated urine tests, of losing relationships who only wanted to talk about my meds list, of health care providers who could no longer see my humanity.
When my symptoms first began, I felt desperate: isolated, stigmatized, and treated as the other. As I became oriented to my new life in the shadowland of pain and medical suspicion, I slowly learned about the politics of disability via activists, artists, and writers such as Alice Wong, Leah Lakshmi Piepzna-Samarasinha, and the Sins Invalid collective. They and many others gave me a framework to understand the life change I was experiencing and how it intersected with other forms of oppression.
This in turn made me look back at my entire life through the lens of disability and ableism. I saw the narrow window of what qualified as a “normal” body and mind, and how easily one could be cast outside that circle. Disability theory showed me that I was not alone. If anything, I was less alone than before, part of a network of mutual aid and care. I learned that the idea of a “normal” body was itself part of the problem.
Years after my diagnosis, I visited a group of incarcerated men to talk about my essay collection on chronic pain, an experience which turned out to be the most challenging, intense, high-level, and free-ranging exchange I’ve had about this topic. I was surprised, and yet the overlaps should have been obvious. They shared their many experiences of pain: its burdens and its isolations, the way pain is visited on a body and a mind. We were talking about the root of social control, which is pain or the threat of pain, meted out over time. The suffering over time which we turned out to share stemmed from our overlapping experiences imposed by the state—because the state thinks we are deviant or likely to become so, because we cannot be trusted and must be surveilled. The prison–industrial complex creates agony not only during incarceration but also in the entire life course of the person, even after they are released—and for others in their lives, too. That is pain. Pain is, indeed, the point.
Pain and social control are so intimately connected that, in fact, they cannot be separated in practice. Drew Leder, a philosopher at Loyola University Maryland who has chronic pain and has worked with incarcerated people on their writing, outlines the overlaps between those in pain and those who are incarcerated. These include a “shrunken world,” depersonalization, disempowerment, scrutiny and tracking by authority figures, the idea that your suffering isn’t real and there’s little way to convince others of your humanity, limited social contact, and an alteration of the experience of time itself. Leder writes how time gets weird: We “may remember a pain-free or illness-free past even if unable to reclaim it,” or consider the future warily, as though it were a mirage of relief—or the opposite, a hell of “perpetual pain, a worsening of symptoms or premature death.” Leder notes that the root of the word “pain” is “the Latin word for punishment, poena,” and that the person with pain “searches for what he or she might have done wrong . . . to bring on such suffering.”
This, as Leder writes, isn’t to equate two unlike conditions, as imprisonment is “more totalising and inescapable, and generally crueller. There, the methods of depersonalisation and disempowerment are used quite intentionally for punitive reasons, and to render prisoners passive and controlled.” And the prison population, “over 60% [B]lack or Latino” has suffered “structures of depersonalisation and disempowerment [that] pre-exist imprisonment.”
Nonetheless, pain and imprisonment overlap. This confluence is especially dire for those who are encircled by both chronic pain and incarceration. By some reckoning, 66 percent of the prison population is disabled, and “incarcerated women are more likely to have a history of risk factors which—in community populations—are known to worsen the experience of chronic pain.” The same study and others reveal that depression and anxiety—those symptoms of trauma—exacerbate chronic pain. The study’s authors note that the research on chronic pain among incarcerated women is “sparse.”
I serve on the community board of the National Pain Advocacy Council, which fights for access to treatment and decriminalization for people with chronic pain (all views expressed here are my own and not those of NPAC). Through that work, I began to see that the stigma we pain patients face is more than a prejudice over incorrect classification of our opioid use. Instead, it is a hardened and deep response, one with very old roots. Within the community board, we began to form alliances with the addiction/treatment/harm-reduction and substance use/abuse community, to begin to articulate that we are not enemies but potential allies.
Shira Hassan writes in her essay “A Secret Stash of Power,” “The medical–industrial complex and [prison–industrial complex] were, and are, interlocking systems, benefiting from the exploitation of nearly everybody I have ever intimately interacted with.” Later she adds, “It is clear that a person’s identities are surveilled, policed, and punished in the person’s attempts, simply, to live.” Hassan’s work reveals that pain patients are not dealing with the effects of a misguided policy but, instead, the very real threat of criminalization because of our pain. Our suffering is meted out through state control as an extension of the War on Drugs and its shadow, the opioid epidemic. And yes, it is meted out on those who are not incarcerated, but it saves its most extreme form for those who are. Underneath all of these interlocking systems is eugenics: the assumption that once you are dubbed either a criminal or a person with significant suffering marking one’s body or mind, you’re ruined and you are probably better off dead. Eugenics and the violent carceral state share much of the same DNA: both seek to cleave off a perceived blight upon a people.
These interlocking systems of extraction—the vast reaches of the carceral state and the medical industry—create profit out of fear and suffering: the debt that families and incarcerated people are thrust into, the financial deprivation that both sickens and is criminogenic. These overlapping circles work together to drain the life out of individuals and communities.
Hassan’s book Saving Our Own Lives: A Liberatory Practice of Harm Reduction (2022) includes an essay by Piepzna-Samarasinha, “Harm Reduction is Disability Justice: It’s Not Out There, It’s in Here,” connecting principles of disability justice to harm reduction. Piepzna-Samarasinha describes opposition to the prison–industrial complex and an intersectional approach to mutual aid and organizing through the “10 Principles of Disability Justice” developed by the Sins Invalid collective. She writes: “I am not aware of a ton of overt movement linkages between harm reduction and Disability Justice—yet. But I can’t help but think that if harm reduction and Disability Justice movements joined together and built coalitions, there’s so much we could win.”
Within the chronic pain community, I think this indicates we can look anew at our work by starting with the tough work of rejecting respectability politics. Many of us have, in desperation, clung to our identities of being “good patients,” of embodying as many middle-class and white behaviors and appearances as we can muster, to differentiate ourselves from those with substance abuse issues and those viewed by the system as “criminals.” If we consider all of those who experience chronic pain and chronic inflammation, we have to admit that many of those who are in the most pain and with least access to treatment are those behind bars.
I was recently invited to participate in a survey connected to the National Institutes of Health that sought to understand the experiences of those who have overlapping chronic pain and addiction issues. This is part of what is needed: to see chronic pain—physical and mental—as a potential beginning of drug use and criminalization, rather than to see either endpoint as a cause, or as mutually exclusive categories. We need to ask how often people turn to drug use because they have untreated pain, in the context of a vast system where treatment is hard to get, expensive, stigmatizing, and in which racism and other forms of oppression determine the kind of care we receive. We might call this the pain-to-prison pipeline, a system in which undertreatment, lack of access to treatment, and dangerous environments all collude to create a storm of pain that, understandably, drives people to desperation.
In any case, what we do not need is the declaration of a “pain epidemic.” Our government uses the word “epidemic” to declare an enemy and focus on a crisis that can be eliminated with targeted action. Pain, instead, is endemic: it is a feature of our social systems, and it acquires unique features when produced within and by institutions, including our prisons and our health care infrastructure. To have a radical analysis of pain means to understand and see where pain is created, who profits from it, and how deeply we rely on it as a major form of social control. Our alliances and solidarity can center around a shared bodily experience that the unaffected often see as “unbearable” or “inconceivable.” We who live it also have untapped strengths and abilities to survive, and those survival strategies—and the visceral experience of pain itself—might be not disparate problems but the very openings that can unite us.
Image: Alexandr Nekrasov/Unsplash