‘Illness and Its Very Concept’

When I decided to move from Brooklyn to Berlin in 2017, I was attracted by the prospect of a medical system that would protect me from debt and premature death. Like eighty-six percent of people living in Germany, I have statutory health insurance, which means that when I had major abdominal surgery in 2022 I did not have any additional copays for my procedure or two-night hospital stay. But that felt like cold comfort as I sat in bed with a blood bag attached to my flesh, in shooting pain and only allotted ibuprofen. At one point I asked my nurse if I could have something stronger. “No,” she responded. “Pain is good. It means you’re alive.”

Given the many failings of the US health care system, it can sound odd to progressive Americans to complain about health care in countries like Germany, which gives its citizens basic amenities like paid paternal leave, subsidized childcare, and monthly childcare funds. But even a system that offers comprehensive access can refuse to provide compassion and relief. Underneath the surface of Germany’s affordable care is an institution that prescribes herbal tea for backaches, meteorite dust for Covid-19 symptoms, or nothing at all. (I am not the first American to complain about their minimalist approach to pain management.) In countless instances German physicians dismissed my concerns and condescended to me, including while I was seeking fertility treatment. One made a point to tell me that I have “bad eggs,” making me feel that he thought reproductive assisted technology was not intended for Black women like me. 

My presumption is not unfounded. Health depends profoundly on income, race, and nationality. In 2017 the WHO reported that half of the world lacks essential health services, and even in states with relatively generous social welfare programs, not all people are seen as equally deserving of care. In their short, piercing volume Health Communism, out in paperback this summer from Verso, the artists and activists Beatrice Adler-Bolton and Artie Vierkant contend that many Western social democracies maintain “their surplus populations”—a term they borrow from Marx but expand beyond his definition of the unemployed proletariat to encompass a shifting collective that can include people with disabilities, the racialized, the aged, the poor, and others not deemed productive—“with overt antagonism,” even as institutions like nursing homes and psychiatric hospitals profit off of them. The book’s central claim, and a reminder of how far away we are from living up to a tenet that might seem basic, is that everyone has a right to treatment: “Health communism means all care for all people.”

The history of medical care in Germany has been marked by intense struggles over the rights of people deemed unwell—the right to health and indeed the right to exist. After the Nazi era, which gave genocidal license to the eugenic tendencies of early-twentieth-century medicine, many on the West German left found it profoundly urgent to advocate for the worth and autonomy of patients. Perhaps the most radical expression of this project was the Sozialistisches Patientenkollektiv (Socialist Patients’ Collective, or SPK), a 1970s psychiatric patients’ collective of which Adler-Bolton and Vierkant provide likely the most comprehensive history in English. 

The SPK’s members sought to educate themselves, dismantle the barriers between patient and doctor, overthrow the power imbalances present in the health sector, and ultimately create a patient-led form of health care. The group’s early theories of health and society have long lain in the shadow of a more sensational aspect of its history: in the mid-1970s some of its members joined the Red Army Faction (RAF), a far-left guerilla group, and West German authorities charged its leader with carrying out attempted bombings, bank robbery, wounding a police officer in a shootout, and membership in a criminal organization, among other things. In recent years, however, the SPK’s initial history and writings have inspired renewed interest. Those essays and pamphlets can seem outré, but they hardly came out of nowhere: the SPK’s effort to find an utterly new way to treat illness in German society was a direct response to the country’s highly contentious medical history.

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In Germany, comprehensive health reforms were first made for workers. In 1883, amid increased labor agitation, German Chancellor Otto von Bismarck passed the Krankenversicherungsgesetz, or Health Insurance Act, creating the world’s first health insurance system. A staunch nationalist, Bismarck adopted progressive measures to unify the new country and prevent his opponents, who were international socialists, from taking power. (“Call it socialism or whatever you like; it is the same to me,” he said during debates about the proposal in the Reichstag in 1881.) Under the new policy, working-class German men were entitled to health, accident, disability, and unemployment insurance through a scheme where the employer and the worker contributed to a comprehensive system. These new health provisions functioned well for men working in the cash economy; women, children, unemployed men, and colonial subjects were not included.

As early as 1900, the American Socialist Party began advocating for a similar state-funded health system, though many members saw the reform as a stopgap measure that might even slow the advent of the revolution they hoped for. In 1915 the American Association for Labor Legislation, a progressive group led by economists, also proposed that the US institute a national health insurance program, including maternity benefits. But conservative politicians, insurance companies, and the American Medical Association—a powerful lobbying group representing physicians—opposed most forms of welfare far more adamantly than did their German counterparts. Adler-Bolton and Vierkant quote Frederick Ludwig Hoffman, an American statistician for Prudential Insurance and an influential opponent of socialized health care, who argued that sick pay would promote “malingering” among workers—they would fake illness to avoid work. Hoffman, author of an 1896 book called Race Traits and Tendencies of the American Negro, was a eugenicist: “Easy conditions of life and a liberal charity are among the most destructive influences affecting the lower races,” he wrote, “since by such methods the weak and incapable are permitted to increase and multiply.” 

While some elites, such as Hoffman, relied on spurious claims to denounce the physical capacity of racial minorities, a reformist section of the upper class advocated for racial integration, women’s suffrage, and medical access. In 1917 Lillian Wald, a nurse and one of the founders of New York’s Henry Street Settlement, testified against eugenics, arguing that “the real malingering is the ‘malingering of health’ rather than the malingering of sickness, that is, the fear of stopping work to secure…needed medical attention when the loss of even a week’s wages might mean destitution.”

The eugenicist ideas that circulated for decades in parts of the medical communities of the United States and Europe reached the height of their influence during the Nazi era. In 1939 German physicians and Reich officials began a secret operation to slaughter children showing signs of physical and mental disability. This quickly expanded into “Aktion T4,” a program in which—with the complicity of nearly the entire German psychiatric community—the state executed adult patients who were epileptic, schizophrenic, long institutionalized, or deemed unable to work, among other classifications. Historians estimate that at least 70,000 and possibly as many as 200,000 people were murdered using starvation, lethal injection, and gassing.¹

In the 1960s a robust anti-psychiatry movement emerged in many countries among a youthful generation that sought to integrate the discipline with the habits of the counterculture, including communal living and sometimes psychedelic drug use.² In England in 1962 David Graham Cooper, a South African psychiatrist, established Villa 21, a program where patients had relative autonomy during their institutionalization. In the 1960s and 1970s Franco Basaglia, an Italian psychiatrist, advocated for deinstitutionalization and the rights of patients in asylums; in 1978, after his death, his wife successfully lobbied for a law named for him that abolished mental hospitals. The groups varied in their political ideology, their countries of origin, and their influence, but they shared a desire to find alternative solutions to address mental suffering. 

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In 1964 Wolfgang Huber, a psychiatrist who had also studied philosophy, began working at the Psychiatric Hospital of the University of Heidelberg, which was founded in 1386 and is one of the world’s oldest surviving universities. (During World War II, Carl Schneider was the head of the university’s psychiatry department and the senior researcher for the T4 euthanasia program; he was responsible for the murder of at least twenty children.)³ Huber opposed the department’s use of conventional therapies, which included electroshock, and argued that the university should concentrate on patient-centered group therapy sessions. 

For a while Huber was able to promote a socially oriented version of psychiatry within the university by giving patients more autonomy to serve as peer counselors and propose their own treatment plans, as well as discussing mental health problems as “a symptom of a deeper underlying sickness of the capitalist political economy,” as Adler-Bolton and Vierkant put it. He found that his patients started having better outcomes—although this could have been the result as much of his nonjudgmental approach and of his rapport with them as of the explicitly political content of the sessions. But before long it came to an end. In a climate of anxiety over anticapitalist sentiments after the 1968 student protests, the leadership of Heidelberg’s psychiatric clinic worried that Huber’s work would delegitimize the rest of the center. When they cancelled Huber’s therapy sessions in 1970, the patients started organizing as the SPK.

The SPK protested the cancellation outside the clinic director’s home, after which Huber was dismissed from his post. Next the collective occupied an administration building. Some members went on hunger strike to demand Huber’s reinstatement, more financial support for patients, and free prescriptions. Initially they were given formal permission to continue their programs in their own space, as well as funding. Huber was supposed to transition away from working at the university but continued to write prescriptions for the group’s members. 

The SPK, which at its height reported having about five hundred members, saw itself as a revolutionary army. The group was small, but its influence stretched beyond Germany. The patients’ talent for Marxist self-organization attracted some of the period’s leading social theorists, including Simone de Beauvoir, Michel Foucault, and Mony Elkaïm. When, in 1972, the SPK published a book-length manifesto called Turn Illness into A Weapon—recently reissued as an audiobook by the Brooklyn-based publisher Wendy’s Subway—the preface was by Jean-Paul Sartre. “On the whole,” he wrote, “it seems that you have subsumed what Marx called alienation and what is made common property in a capitalist society, under illness and its very concept. This is well done.” (He may have developed his interest in psychiatry in part after experiencing the effects of a mescaline trip, after which, the historian Mike Jay has written, he was “haunted for weeks…by lobster-like creatures scuttling just beyond his field of vision.”)

The collective’s basic philosophy seemed simple, but it was far from commonplace. “What we started from was,” they wrote toward the beginning of in Turn Illness into A Weapon, “that all patients in this society must have a right to live.” They also believed that Hegelian dialectics, which they learned through reading groups and in patient-led group therapy, could shed light on patients’ emotional states and help them reimagine the place of science in society. It’s not clear whether discussing nineteenth-century philosophy cured schizophrenia and other mental illnesses—given the brevity of the SPK’s presence at the university hospital from 1970 to 1971, there is little data about the effectiveness of their treatment—but they preferred it to electroshock therapy and lobotomy, and it gave them a sense of agency. 

Members of the SPK believed that medical research had strayed from its purported value of serving the sick. In their view, Adler-Bolton and Vierkant suggest, “the science industries” spoke the language of “public health” in theory but in practice devoted “the total focus of their research and attention toward profit maximization.” The group’s manifesto put the matter starkly: patients, it argued, had devolved into “sick-commodities” and medical universities into a “training stop and career step for specialists.”

Unlike other members of the antipsychiatry movement who rejected pharmaceuticals and other remedies, Adler-Bolton and Vierkant write, the SPK “wholly embraced treatment.” Their central point was that “care should be self-directed and synergetic: a dual dialectic between doctor and patient.” Not only did the SPK want everyone to have access to treatment, they argued for “patients’ control over all medical education and its application,” broadening and elevating ordinary people’s capacity to discuss and make decisions about their own health. In essence, their stress on emancipation and cooperation led to them to advocate for a people’s university of science.

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The SPK soon came under criticism from psychiatrists and the liberal West German press, which described the patients as “left-wing madmen” and Huber as a “cult leader.” The organization had a number of working groups, or “working circles,” some of which focused on therapy or exercise. Others were overtly political: one monitored police radio activity to protect protesters. One former member referred to the SPK, positively, as a “politically motivated crisis centre,” but many observers, including the vice chancellor of Heidelberg’s psychiatry department, questioned whether the mentally ill should be involved in political activity: “Consider what enormous physical and mental forces a struggle for the overthrow of a social order requires,” he wrote. “It is against medical ethics, it is simply inhumane to exert such a struggle on the back of mentally disturbed people.”

Before long, the SPK drew close to the RAF. In her book Screening the Red Army Faction, Christina Gerhardt notes that throughout the 1970s about a dozen members of the SPK became an important part of the second generation of the RAF.⁴ In February 1971 Huber gave a place to stay to two of the RAF’s cofounders, Gudrun Ensslin and Andreas Baader, and rumors spread that the SPK had connections to domestic terrorism. Later that year Huber was arrested and sentenced to four and a half years in prison for his alleged role as the “head of a criminal organization.” 

Huber’s arrest did not wholly disband the SPK—he and his wife, who was also convicted for her involvement in the group, began a hunger strike in November of 1975, and organizers launched an international campaign to demand their freedom. When the Hubers were released in 1976, their medical licenses were revoked, and the group’s membership eventually dwindled. Huber himself disappeared from public life. Today, according to Adler-Bolton and Vierkant, “the group is almost more present in professional and para-academic ‘terrorism and security’ literature than it is in other academic literature or popular culture.”

The speed of the SPK’s rise and fall should not distract from the fact that the group’s history has important implications for patient autonomy and health. It shows how German psychiatric patients, who would have been marginalized and persecuted under the Nazi regime, grappled with the legacy of the “eugenic burden” and demanded a collective, less hierarchical model of care. Perhaps the best part of the SPK’s philosophy was its insistence that discussions about medicine should be radically open—that people with all kinds of bodies and minds were experts about their anatomy. The reissue of Turn Illness into a Weapon as an audiobook meant to be accessible to disabled people and read aloud by a collective of artists, organizers, and community members—most of whom are disabled, mentally ill, or neurodivergent—suggests that this aspect of the group’s legacy remains alive today. 

Yet the group itself, as it now stands, does not offer much of a model: the SPK’s website is a mirror of the 1990s Internet, minimalist and anonymous. Their philosophy seems to have evolved in a direction common among many science skeptics: a profound disdain for public health measures. One section of the site, “Against All Sciences,” declares that “each and every science, and even and properly the most exact science, as mathematics and the science of nature, has been always the same, right up from its very origin and basics, and even before the Nazi showed up: that is, the murder-market’s logic of the excluded contradiction.” The group picketed screenings of SPK Complex, a sympathetic 2018 documentary about their history by the filmmaker Gerd Kroske. (“The effects of the forces of illness creating a new reality and blasting away the existing one, in principle, do not fit into the iatrocapitalistic scope of exploitation of the commodity film,” they wrote at the time.) In their disorienting statements about the Covid-19 pandemic, they give free rein to anti-vaccination sentiments and freeform paranoia: “The international medical doctors’ class is launching its global terrorist propaganda of ‘virus’, ‘epidemic’ and ‘pandemic’ and the associated medically prescribed coercive measures that do not even try to hide their medical-military essence.” Reading this, it is hard not to conclude that the movement has lost whatever seriousness it might once have had. 

Community-oriented collectives that fought for health equity—like the Black Panther Party, as the scholar Alondra Nelson recounts in her book Body and Soul (2011)—or worker-led initiatives for universal health coverage, such as those organized by the AFL-CIO, have stood more practically against the consumer logic of health care that has become ubiquitous in the US. The current German health care system, meanwhile, is a private-public conglomeration, with dozens of private providers enforcing the service provision of the statutory health insurance system. Although everyone is required to have health care—and most people do—the quality of services varies depending on one’s provider and access to clinics. As the country’s conservative and far-right parties continue to gain support, budget cuts in medicine will, if anything, likely get more severe in the years to come. Due to increased energy and medical costs, between 20 and 30 percent of German hospitals are at risk of bankruptcy. Some experts predict that a fifth could close by 2034, in a country that prided itself on having a surplus of hospital beds even at the height of the pandemic. 

Late last year the German parliament passed a major reform proposed by the federal minister of health, Karl Lauterbach, a member of the Social Democratic Party: rather than reimbursing hospitals for the treatment they offer, the government now provides a low, flat rate of funding to all hospitals, with additional support for “high-performing” ones. The measure is intended to cut costs by centralizing care and reducing the number of hospitals by several hundred. In practice, it will leave Germany’s low-income communities with fewer and more crowded medical facilities—closures that would be particularly felt by people living in refugee camps, rural areas, and the former East Germany. 

Two weeks after my surgery in 2022, having removed my own stitches, I was still incensed by the hospital’s refusal to give me sufficient pain medication. For a second, I thought maybe care had improved in the US. I decided to look up a comparison, hoping that my country of birth might redeem itself. The statistics proved me wrong. The life expectancy for women in Germany is eighty-three years. For Black American women, it is seventy-six.