On March 29, 1972, in Oakland, California, the Party launched a three-day Black Community Survival Conference at De Fremery Park, known to the Panthers as Bobby Hutton Memorial Park after the first member of the Party besides Newton and Seale.1 This park held much meaning for the group. “Defremery was a tattered park,” Elaine Brown recalled. “Its thinning grass reflected the poverty of West Oakland, where Bobby . . . lived and died. But it was our park now, the people’s park. It had come to be called ‘Bobby Hutton Memorial Park.’”
The Black Panther reported that conference attendance over the three days topped sixteen thousand.2 Of these attendees, some eleven thousand people were purportedly screened for sickle cell anemia, an incurable and ultimately fatal genetic disease that causes typically round red blood cells to take a sickle shape, depleting their ability to circulate oxygen through the body. Encouraged by positive reception to its screening program, the Party’s newspaper boldly predicted that by 1973 the organization would have tested as many as one million possible carriers of the trait or unwitting disease sufferers using mobile medical units to extend the health services provided by its network of chapter-based PFMCs.3 This scenario did not come to fruition. In fact, by the following year, the Party came to play a diminished role in efforts to raise public consciousness about sickle cell anemia when federal authorities, working with state public health agencies, brought the regulation of the genetic condition under their purview after years of inattention to the disease. At the same time, the condition became a rallying cry for other representatives of the black community, ranging from more moderate civil rights organizations to soul music radio stations. The inclusion of sickle cell anemia in the national healthcare agenda represented a bittersweet success for the Panthers who, with their campaign, sought to shine a light not only on the plight of disease sufferers but also on the inequities of a profit-driven U.S. healthcare system sustained by publicly funded biomedical research.
In the spring of 1972, the Party’s sickle cell anemia initiative was a hallmark of its health politics. This campaign epitomized the Party’s social health perspective, highlighting both the biological and the extra-medical circumstances that contributed to the prevalence of sickle cell anemia among African Americans and to the disproportionate burden of disease borne by blacks more generally. A genetic disease primarily affecting persons of African descent, sickle cell anemia also proved a particularly effective vehicle for Party political ideology. As a condition of the blood, sickle cell anemia evoked consanguinity and racial kinship. This kinship entitled the Party to speak to and for the experiences of black suffering and to ground these experiential claims in the history of the African diaspora. The Panthers’ attention to the needs of sickle cell trait carriers and disease sufferers was thus an especially powerful symbol of its affiliation with and service to African American communities.
The Party’s sickle cell health politics involved two interdependent emphases: health education, imparted by the activists via a variety of media, including newspapers and television, that combined lessons in genetic disease inheritance with ideological framing and political instruction; and free genetic screening for sickle cell anemia traits and disease administered in private homes, at its chapter-based clinics, and at public events, all carried out under the auspices of the mostly titular People’s Sickle Cell Anemia Research Foundation (PSCARF).4 In keeping with the egalitarian principles of the Party’s health politics, the genetic screening program relied on the labor of Party cadre and community members in addition to the work of volunteer medical professionals. In addition to the sickle cell screening it carried out in intimate settings (such as homes, schools, and its health clinics), the Party conducted large-scale testing at community gatherings using Sickledex, a recently introduced, inexpensive, and portable test that allowed preliminary sickling diagnoses to be made outside the laboratory.
The health education dispensed by the Black Panther Party contextualized sickle cell anemia within a matrix of mediating factors that included not only biology but also racism and poverty. The Party’s explanation for the disease’s origins strategically reworked earlier and often racially essentialist associations between sickling and blackness that had emerged in 1910 beginning with the initial diagnosis of a case of sickle cell anemia in an Afro-Caribbean man. Drawing on theories from anthropology and population genetics, which suggested that sickling offered resistance to malaria in sub-Saharan Africa, the Party developed an etiological narrative for sickle cell anemia that triangulated biology with social environment and political ideology. The group’s social health frame did not deny the significance of disease inheritance—indeed, its newspaper featured pieces that detailed the genetic transmission of sickle cell anemia. Rather, the Party’s explanation for the persistence of sickle cell anemia foregrounded the history of racial slavery, contemporary racism, and the vagaries of a profit-driven healthcare system that it alleged privileged revenue over healing. The Panthers were, in effect, “spin doctors,” who politically diagnosed illness. In drawing attention to sickle cell anemia and the plight of those suffering from it, the Party worked not only toward preventing the disease but also toward eradicating the societal ills that enabled its persistence and exacerbated its effects.
Although its social health frame was distinctive, the Black Panther Party was not alone in its efforts to bring attention to the plight of African Americans suffering with this blood disease, which is characterized by “crises” or bouts of chronic pain.5 The term “crisis” also aptly describes the bouts of ideological debate and political posturing that would unfold around the issue of sickle cell anemia. These debates were precipitated by a 1970 Journal of the American Medical Association (JAMA) article by a physician named Robert B. Scott that stressed the relative invisibility of sickle cell disease, compared with other genetic diseases. Moreover, the article exposed disparities in federal funding for research on genetic diseases,6 revealing that the U.S. National Institutes of Health devoted considerable resources to the study of genetic conditions common among white Americans, but that the funding the agency provided for research on treating and preventing sickle cell anemia, which predominates among (but is not exclusive to) African Americans, was nominal by comparison. For the Party, this article was paradigmatic. It provided the Panthers with support for its contention that the administration of President Richard Nixon failed to equitably support the healthcare needs of all U.S. citizens and, furthermore, strengthened their claim that the state’s disregard of black health was both acute and deliberate.
This widely publicized and circulated JAMA article was also partly responsible for fueling a contest among sickle cell stakeholders, particularly activists and politicians, seeking to take credit for meeting the heretofore neglected health needs of poor black communities.7 The Nixon administration, other civil rights organizations, and a nascent sector of sickle cell philanthropies, such as the National Sickle Cell Disease Research Foundation, among others, vied with the Panthers to prove their dedication to African American constituencies by garnering resources for treating and preventing a disease that affected them disproportionately. Sickle cell anemia activism was one of the primary sites through which the Party established its legitimacy in black communities and among the broader public. Unsurprisingly then, as the visibility of sickle cell anemia increased, Party leaders’ worries about losing their ability to shape the disease’s political significance also grew, as competing stakeholders with political agendas diametrically different from their own angled to influence the meaning of the disease. The Party’s anxiety over its diminishing influence was voiced in several articles in the Black Panther in which organizations and government agencies that had taken up the cause of the sickle cell disease were fiercely criticized.
The Party’s apprehensions were borne out when the Nixon administration, with a storehouse of fiscal and political resources at its disposal (despite its austerity politics), effectively resolved the sickle cell “crisis.” Within a few months of the Party’s De Fremery Park event, after a year of testimony and public debate, the U.S. Congress passed the National Sickle Cell Anemia Control Act of 1972, to establish a national program for genetic counseling and for the diagnosis and treatment of sickle cell anemia, and to fund scientific research on the disease with the aim of finding its cure. This expression of federal support for what had historically and imprecisely been understood as a “black disease” blunted somewhat the Party’s accusation that the state neglected African American health concerns and, as a result, also diminished the organization’s ability to persuasively frame the disease in a social health context.8 Although this social health perspective would lose none of its credence, its political utility to the Panthers was depleted when public health agencies attended to sickle cell anemia and African Americans were indexically incorporated into the U.S. healthcare polity.9 The symbolic inclusion of blacks in the nation’s health infrastructure established their “biological citizenship”—individuals’ claims on the state based on illness status (instead of the “social” and “economic” citizenship the Party had sought for oppressed communities since its founding)10 —even as it failed to stem race- and class-based health inequality.
Bringing the “Invisible Malady” into Relief
In the early twentieth century, sickle cell anemia was widely known in scientific circles. Aspects of this “first molecular disease” were studied by hematologists, chemists, geneticists, and social scientists.11 Yet the disease remained “invisible” to many outside these professional communities, including those most likely to be affected by it.12 Although the severity of African American health issues was acknowledged before World War II—what are now called “racial health disparities” had long been a fact of black life—neither public health agencies nor the black press extensively publicized sickle cell anemia as a “disease of significance among blacks” before the 1970s.13 The October 1970 JAMA article, however, appreciably boosted sickle cell anemia’s visibility.14 Scott’s article, “Health Care Priority and Sickle Cell Anemia,” exposed glaring funding disparities for research on genetic diseases and, in the process, brought national attention to sickle cell disease.15
This piece was a noteworthy source of inspiration for the Party. However, sickle cell anemia was on the Party’s radar screen at least one year before the publication of Scott’s critique. In June 1969 Field Marshal Don Cox announced that the disease was among the issues that the Party would address in its health programs. In the same month the Black Panther published a short article on sickle cell anemia, “Medicine and Fascism,” that anticipated some themes of the sickle cell anemia campaign, especially unacknowledged and unaddressed black pain and suffering. Sickle cell disease was also identified as a topic of concern in a health workshop at the Party-organized Revolutionary People’s Constitutional Convention of September 1970.16 Nevertheless, the JAMA article stoked the activists’ interest in the disease and furnished a stark and specific example of medical inequality that was readily importable into its health politics.
Scott, at the time a researcher at the Medical College of Virginia Health Services Center in Richmond, declared sickle cell anemia “a major public health consideration.”17 The disease would proliferate, Scott argued, as long as fiscal and social resources dedicated to it remained insufficient. He prescribed screening and genetic counseling as ways to decrease the disease’s prevalence.18 The article suggested that more could be done to prevent sickle cell anemia on at least two additional fronts: advocacy and fund-raising. Scott reasoned that sickle cell advocacy groups needed to be more effective in raising both consciousness and money. He called on black communities, in particular, to work to aggregate the few existing local philanthropic organizations dedicated to sickle cell anemia into a national effort capable of applying additional resources to the goal of ending the disease. “There is no nationwide volunteer organization devoted to sickle cell anemia,” Scott wrote.19 “There are groups in cities throughout the country which are active and no doubt increasing in effectiveness, [but they are] not coordinated nationwide.”20
Although the Party came to criticize the plethora of charitable organizations that sprang up in response to the sickle cell “crisis” precipitated by the publication of Scott’s article, in 1971 the group formed PSCARF21 and worked with the Mid-Peninsula Sickle Cell Anemia Foundation, a research initiative and philanthropy initiated by Stanford medical student Donald Williams and his peers.22 Despite the Party’s claims to the contrary,23 there is little evidence that the PSCARF carried on scientific investigations of the disease. The establishment of this foundation was nevertheless important because it shored up the larger sickle cell anemia initiative by allowing the Party to augment its grassroots credibility among underserved communities with scientific authority.24 Specifically, the foundation, led by the physician Tolbert Small, already facilitated the Party’s affiliation with several prominent medical researchers and scientists whom Small recruited as members of its advisory board.25
Importantly, the formation of this advisory board was necessary for the PSCARF to secure nonprofit status and receive charitable donations.26 Donations to the foundation to support the Party’s sickle cell screening and educational outreach were solicited in the Black Panther; one such solicitation asked for “people [who] can contribute their time, effort and money toward educating other people and finding a cure” for sickle cell anemia.27 Monetary support was also sought at Party-sponsored rallies and social events and by Party members in front of local businesses.28 The sickle cell anemia campaign received support from other philanthropies.29 In-kind donations also spurred interest in the sickle cell initiative. In Portland, Oregon, for example, the owner of a local McDonald’s franchise supplied the Party chapter there with coupons for a free hamburger, fries, and soda that were given to members of the community who took part in the genetic testing program.30
One member of the PSCARF’s board of advisers was the renowned scientist and avowed Communist Linus Pauling, whose research with collaborators in 1949 used electrophoresis, a common biochemical laboratory technique, to establish the molecular basis of sickle cell anemia disease.31 Electrophoresis analyzes the structure of molecules by observing their migration in an electrical field. The hemoglobin molecule comprises four polypeptide chains, two alpha and two beta subunits. The mutation that results in sickle cell anemia occurs when one amino acid on the beta chain, glutamic acid, is replaced by another, valine. As these amino acids have different electrical charges, the former charged and the latter uncharged, observing the molecule in an electromagnetic field yields information about the structure of hemoglobin.32
William C. Davis, the brother of the activist–actor Ossie Davis, who held a PhD in biochemistry from the University of Idaho, also served on the board.33 In the early 1970s, after his doctoral training, William Davis moved to Oregon to take a job as the director of clinical research at United Medical, a commercial laboratory; from this vantage, he was able to assist Portland Black Panther leader Kent Ford in establishing a medical clinic and with sickle cell anemia screening and education outreach efforts.34 Davis stressed that the sickle cell anemia campaign was not just testing but also “educational outreach . . . telling them about the disease, what it was, and what they should do in terms of treatment.” Davis, too, felt that the state’s neglect of sickle cell anemia was “an epidemic attack . . . an attempt to decrease the number” of blacks in the United States. Davis, who directed the medical lab at Emmanuel Hospital in Portland, Oregon, was never a member of the Party, but his affiliation with the Panthers resulted in harassment from federal authorities; shortly after moving to Oregon, he was visited at his home by an FBI agent who suspected that Davis was going to lead the local Party.35
The Washington, D.C., pediatrician Roland B. Scott (no relation to JAMA author Robert B. Scott) was a member of the PSCARF board as well. Chairman of the pediatrics department at Howard University Medical Center at this time, Scott also founded the Center for Sickle Cell Disease there in 1972.36 Dr. Charles Whitten, a leading sickle cell anemia researcher based at Wayne State University School of Medicine, where Small had been a student, and a founder in 1971 of the Sickle Cell Detection and Information Center and the Sickle Cell Disease Association of America, also advised the Party.37 Although the board never met as a body, the Party’s affiliation with Small, Pauling, Davis, Scott, and numerous other advisers imparted credibility to the Panthers’ health politics, as the authority of these doctors and scientists was symbolically extended to the Party’s sickle cell initiatives.38
PSCARF lent a patina of scientific credibility and in turn advanced the Panthers’ efforts to garner financial donations for its sickling initiatives. Although much of the Party’s financial support continued to come from the sale of its newspaper in the United States and abroad, the foundation was an important fund-raising conduit. Donations to support the foundation’s work were solicited regularly in the Black Panther between 1971 and 1972. A solicitation in the newspaper, for example, encouraged readers to send money to the Party headquarters in Oakland in support of sickle cell. The Party claimed that 80 percent of the funding necessary to conduct its sickle cell anemia campaign was provided through donations. While this figure is impossible to verify, the fact that the FBI specifically targeted the Party’s fund-raising for its sickle cell anemia campaign—for example, the FBI instructed the Oakland police department and other Bay Area police authorities to “arrest for unlawful solicitation the Black Panther Party members who sought public donations for the [sickle cell anemia] program in public places”—suggests that this initiative may have inspired substantial financial backing.39
The JAMA commentary that inspired the formation of PSCARF influenced the Party in another important way. By exposing a substantial biomedical research funding gap by disease, it supplied the Party with hard evidence in support of the activists’ assertion that the general lack of public awareness about sickle cell anemia was abetted by the federal government’s racially motivated fiscal neglect of black health. “In 1967,” Robert Scott detailed, “there were an estimated 1,155 new cases of SCA, 1,206 of cystic fibrosis, 813 of muscular dystrophy, and 350 of phenylketonuria. Yet volunteer organizations raised $1.9 million for cystic fibrosis, $7.9 million for muscular dystrophy, but less than $100,000 for SCA. National Institutes of Health grants for many less common hereditary illnesses exceed those for SCA.”40 Despite the fact that sickle cell anemia occurred in a “similar order of magnitude” to many other genetic diseases, Scott complained, the disease had not received comparable private interest or public funding.41
Of note was the fact that the genetic diseases Scott compared might be understood to have distinct racial “identities”:42 cystic fibrosis, muscular dystrophy, and phenylketonuria predominate among persons of European descent, while sickle cell anemia is most common among persons of African descent. The author, however, never explicitly charged that racism lay behind the lack of attention that sickle cell anemia had received to date. The implication of his analysis was nevertheless unmistakable; the social status of the sufferers of the respective diseases shaped both public sympathy and levels of government funding. The Party was not alone in viewing the health disparities that Scott disclosed as issues of racial politics. A similar interpretation of the Scott article was made by Senator John Tunney of California, a cosponsor of the bill that became the National Sickle Cell Anemia Control Act: “I think it is fair to say—and research figures prove the fact—that if sickle cell anemia afflicted primarily white people instead of black, we would have made the commitment long ago to end this disease.”43
Echoes of Scott’s argument reverberated in the pages of the Black Panther. These Party news items magnified the racial bias that was merely insinuated by Scott. For example, one article complained that sickle cell anemia “has not received the attention or consideration from public agencies” despite the fact that it “is as crippling, as painful and as deadly” as diseases that “primarily affect white people.”44 Small, an architect of the sickle cell anemia campaign, recalls that in 1971 when he and Party member Ronald “Doc” Satchel embarked on a speaking tour of several Party medical clinics to drum up publicity for the initiative by holding press conferences and to instruct health cadre in how to establish education and screening initiatives, he quoted liberally from the JAMA article “to document the neglect of the United States government in dealing with sickle cell anemia.”45 The rehearsing of Scott’s analysis thus formed a pillar of the sickle cell anemia initiative. The Party found in Scott’s revelation of the state’s disparate dedication to its citizens’ health needs the building blocks of a powerful critique that it hoped would resonate with black communities and simultaneously mobilize them around its sickle cell anemia initiative and its political philosophy.
“The People’s Fight against Sickle Cell Anemia Begins”
The Party announced the formal start of its sickle cell anemia campaign in May 1971 in an article in the Black Panther titled “The People’s Fight against Sickle Cell Anemia Begins.” With this item, which ran accompanied by two photographs of volunteers (likely affiliated with its Chicago chapter, which had begun a sickle cell anemia campaign one month prior) administering sickle cell tests to black children in a classroom, the Party unveiled the ambition and breadth of its initiative. The organization declared its intention to raise awareness about the disease as well as its plan to expand the alternative health infrastructure initiated with the PFMCs to include its sickle cell anemia prevention efforts—through the interlinked activities of health education and genetic screening.46 This response to the sickle cell “crisis” was not, however, a public health campaign in any conventional sense; it was a social health praxis in which ideas and action were united to expose the political stakes of sickling.
The Party’s ideational aims were advanced, in its words, in “a massive educational campaign” through which information about the “nature,” “origin,” and “effects” of sickle cell anemia, “its prevalence among Black people,” and “why the racist U.S. government had done nothing to help” was circulated to black communities.47 To this end, its educational outreach included basic instruction in the genetic transmission of sickling, yet extended beyond this focus; the Party offered up scientific information about the disease together with social critique and political analysis. The group endeavored to place sickle cell anemia in a broader context by advancing a conception of the disease as a simultaneous biological, historical, and sociopolitical phenomenon.
Much of this work of framing sickle cell anemia transpired via a range of media that served as conduits for the Party’s health ideologies.48 In commentaries, self-published pamphlets and brochures, and local chapters’ newsletters; at the PFMCs; and at political rallies, Party members and their collaborators embarked on an educational crusade.49 Between 1971 and 1974 the Party published editorials and interviews that described the mechanics of sickle cell anemia in detail in addition to dozens of other items on the topic, ranging from solicitations for donations to announcements of events and sites at which it would offer free genetic screening for sickle cell anemia.50 The Party additionally made use of other media outlets at its disposal—including broadcast television and the alternative press—to expose the failings of the U.S. public health system and to publicize the Party’s alternative ameliorative efforts in its stead.51
Typical of the science-based health information disseminated by the Party was an article in the Black Panther titled “Black Genocide: Sickle Cell Anemia.” The cover story of the April 10, 1971, issue, this article ran alongside striking photographs of normal and sickled red blood cells. It described the genetic transmission of the disease and illustrated this biological process as well through an accompanying pedigree chart that visually depicted how sickle cell disease may be transmitted to a child if both parents carry recessive genetic traits for sickling.52 Other items in the newspaper limned sickle cell anemia as “a blood disease” resulting from the presence of “Hemoglobin S,” an “abnormal” form of “the matter in the red blood cells which gives the red coloring to the cells and which carries the oxygen in the body.”53 Scientific explanations for the bouts of pain that tormented sufferers of the disease were also circulated.
With the Party’s educational outreach, technical information about sickle cell anemia was frequently couched in a form of ideological editorializing, through which health promotion and science literacy were combined with political education. This approach was on vivid display in February 1972 when Seale; Marsha Martin, a Party member and Mills College student body president; and Donald Williams, a Party ally and Stanford University medical student, appeared on the popular, nationally televised variety program The Mike Douglas Show to discuss sickle cell anemia.54 Seale and his collaborators were invited by the artists John Lennon and Yoko Ono, to whom Douglas turned over hosting duties for one week. The constellation of controversial artists and activists guaranteed wide circulation of the Party’s sickle cell anemia campaign among the public.
The respective presentations of Seale, Martin, and Williams underscored several aspects of the stakes of sickle cell anemia. Martin, who was heavily involved in the planning of the Party’s survival conference that took place one month later, used this platform to decry the lack of healthcare services available to the poor and the uninsured. She lamented the fate of those blacks who “for money reasons . . . aren’t able to go to hospitals” and expressed sympathy for those “parents [who] are unable to provide proper medical care for their kids.” Many African Americans “are unaware of a lot of diseases . . . there are a lot of people who know nothing about [sickle cell anemia],” she continued. Martin’s comments also highlighted the social inequality, including poverty and inadequate healthcare services, which made black self-help initiatives such as the Party’s sickle cell anemia campaign urgently necessary. The Party programs to be featured during the upcoming conference were intended to help “people not to [have to] rely on the local government, [or] the establishment,” she explained, differentiating between the trustworthy “authentic expertise” provided or vouched for by the Party and the scientific authority that oppressed communities should regard skeptically.55
Clad in Afrocentric attire, physician-in-training Williams followed Martin and used his time in the spotlight to define sickle cell anemia in terms of molecular biology. In answering Lennon’s and Douglas’s questions (“Does this show up in a normal, everyday physical?” “How is it diagnosed?”), he explained the mechanics of the genetic disease. (The descriptions were so technical that, at one point in the conversation, Douglas sarcastically quipped, “Oh, you fellows with those medical terms!”) Lingering on the bleak state-of-the-science with regard to preventing and treating sickle cell anemia, Williams also appealed to authentic experts, and for more and more ethical scientific research into the disease, in contradistinction to “the kind of experiments that were done with the Tuskegee experiment [beginning] in 1932.” Drawing this contrast, Williams confirmed that the Party’s sickle cell anemia campaign unfolded against the backdrop of this notorious research program into the effects of late stages of syphilis, several months prior to the July 1972 news article that brought it national infamy.
Williams next spoke about the work of the Mid-Peninsula Sickle Cell Anemia Research Foundation, which he founded and ran with other Stanford medical students. The foundation worked with the Party and others to “educate the entire black population in this country about sickle cell anemia.”56 Williams also mentioned G6PD deficiency, another genetic disorder associated with malarial resistance. As part of its health outreach, the Party distributed a brochure titled “Two Common Diseases of Blacks: Origin of Sickle Cell Anemia and G6PD Deficiency,” created by Williams with other members of the foundation. Williams exhibited this brochure during his appearance on The Mike Douglas Show. Williams’s presentation and indeed his very presence underscored the importance of trusted experts to the Party’s health initiatives. Such experts conveyed appropriate health education to black communities and conducted ethical biomedical research studies.
When Seale joined the hosts and Martin and Williams onstage before a white Philadelphia studio audience, he expounded on how the sickle cell anemia campaign exemplified the Party’s extensive survival program platform as well as its political commitments. He offered the campaign as a “concrete example” of how collective effort could produce social transformation, describing how free medical care and free genetic testing coordinated by the Party (and administered with the help of local communities) modeled “freedom” in the form of an alternative vision of U.S. society in which human needs were provided for and human rights were guaranteed. Seale, in this way, amplified the points about black health raised by Martin and Williams and additionally situated these issues in the organization’s broader social health mission.
Seale, Martin, and Williams articulated three sickling “discourses”: local and federal governments’ neglect of poor black communities’ health that in turn obliged their self-reliance; the necessity of trusted sources of health information, healthcare services, and biomedical expertise; and a unique conception of African American well-being that ranged from the individual body to society as a whole. Drawing our attention to the interpretive flexibility of sickle cell anemia, the anthropologist Melbourne Tapper observes that throughout the twentieth century there have been numerous “discourses” of the genetic disease; it has stood in for myriad issues and ideas, including race, citizenship, and scientific progress.57 Extending Tapper’s insight to the Party’s educational outreach reveals that the activists also forged an overarching message about sickle cell anemia from several discourses. Frequently disposed in unison, the themes of the Party’s educational platform were plot points of a social health metanarrative that served as a backdrop to the genetic testing it provided. These discourses about the stakes of sickle cell anemia were transmitted by the Party in several venues besides television and frequently joined a few others—namely, charges of state-backed genocide through medical neglect and mistreatment; plaints of protracted black suffering, from slavery to sickling; and the valorization of the experiential knowledge accumulated as a result of this painful history.
Accusations of government negligence arose repeatedly in the Party’s rhetoric around sickle cell anemia. Evidence of this neglect—such as that supplied in Scott’s JAMA article—established the exigency of the Party’s sickle cell anemia campaign and other community service programs. This was one intent of a special September 1974 issue of the CoEvolution Quarterly (a “supplement” to the Bay Area counterculture publication the Whole Earth Catalog) guest edited by the Party—mostly by Brown, who had been recently appointed Party chair by Newton and served as editor of the Black Panther for several years prior.58 At ninety-five pages, this publication was a compendium of the Party’s more than one dozen survival programs, developed to “meet the needs of the community” until such time as “social conditions” were improved for poor blacks.59 A section of the special issue devoted to the group’s sickle cell work enumerated the technical and human resources required to run the sickle cell anemia campaign. Precisely detailing the many services it supplied to black communities, the organization indicted the state for all of the services it did not provide, for its inattention to the basic necessities of all of its citizens.60
The state’s failure to prioritize an incurable genetic disease predominantly affecting African Americans (and black health, more broadly) was, for the Party, but one tactic of a larger, systematic strategy to eliminate African Americans that also included fatal incidents of police brutality, the unchecked proliferation of drugs in black communities, and attempts to temper procreation through the abusive, compelled sterilization of African American women.61 The fact that the few existing genetic counseling programs regularly recommended that two sickle cell trait carriers not bear children together—lest the offspring of the two carriers have the misfortune of having the disease, a possibility for which there is a 25 percent chance—also heightened African Americans’ concern that medical professionals, working at the behest of the state, were more committed to eliminating blacks than to eradicating the disease.62 The Party’s accusations of genocide expressed its awareness of what Michel Foucault theorized as “biopower,” the modern state’s authority to both “let live” and “make die.”63 Sickle cell anemia was not merely a debilitating condition, the Party contended, but also the state’s biological weapon. The neglect of the disease was alleged to amount to a “plan of genocide upon Black people.”64
Charges of state-sponsored genocide were not new to black power–era social movements. Such claims had a long history in African American political culture. At prior moments in the twentieth century, similar accusations had been levied. In 1951 the Civil Rights Congress leader and attorney William L. Patterson spearheaded the publication of We Charge Genocide, a chilling account of the racist abuses suffered by blacks in U.S. society and an impassioned appeal for international intervention to the United Nations Convention on the Prevention and Punishment of the Crime of Genocide (a panel established a few years prior in response to the atrocities of the Holocaust). Submitted to the UN by Patterson and the activist–actor Paul Robeson, the report decried the tenuous circumstances of black life in the United States that included “the willful creation of conditions making for premature death, poverty and disease.”65 The report’s conclusion that blacks “suffer from genocide as the result of the consistent, conscious, unified policies of every branch of government” was echoed by the Party.66 Not only did accusations of state-sponsored genocide against African Americans predate the allegations of black radicals in the 1970s, these suspicions were also held in many quarters of the black community. Citing an unnamed (but presumably African American) Howard University Medical School faculty member who confessed, “I have fears myself,” a 1972 Wall Street Journal article on the sickle cell “crisis” noted that “accusations of ‘genocide’ come from . . . sophisticated black medical men” as well as “angry community leaders [and] Black Panthers.”67 In the face of what the Party (and, indeed, many others) deemed the state’s calculated disregard, and its persistent discriminatory social policies despite recent legislative civil rights victories, the sickle cell anemia campaign was rhetorically situated by the Party as a “fight” against the disease that at the same time struck a blow against “racist and genocidal policies.”68
Another predominant theme of the Party’s sickle cell educational outreach was the protracted history of black suffering. To realize this argument, the Party “dramatized” sickling.69 This origin narrative forged a link between the historical injury of racial slavery and blacks’ contemporary suffering from sickle cell anemia and between the ecological “fit” of blacks with an African homeland and their corresponding incompatibility with a U.S. society stratified by race and class. One such instance was the article “Black Genocide”; the centerpiece of this item was a politico-etiological account of sickle cell anemia that construed the disease as a corporeal consequence of the slave trade:
In Western and Central Africa, where there is a high incidence of Malaria . . . a natural immunity against this dreaded disease was built up by some of the People. . . . The actual shape of the red blood cells in these people began to transform. Instead of being the normally round, donut shape, their blood cells became elongated into a sickle-like shape.
When Euro-american slave traders invaded the African continent and forcibly removed the people from their homeland to the U.S., the people naturally began to be affected by this new environment. That is, what was once an advantage in their homeland, became a disadvantage in this foreign environment. Those who had the sick-led red blood cells . . . began to suffer terrible consequences of their transplantation from one continent to another. . . . Black People in the U.S began to suffer from anemia from these sickled red blood cells.70
This depiction suggested that the pain of slavery continued to assert itself in the present as sickling crises.
The Party’s version of the etiology of sickling exhibited the unnamed author’s familiarity with the prevailing evolutionary account of the disease, first advanced in the 1950s by Anthony C. Allison, a British researcher trained in biochemistry and in genetics. After several years’ investigation in Uganda, Allison determined that the sickle cell trait was a genetic mutation that afforded protection from the malarial outbreaks endemic in some regions of Africa.71 This strategic use of Allison’s explanation conflated sickle cell trait with sickle cell anemia disease to emphasize that the genetic mutation was beneficial to blacks in their “natural” African environment and became deleterious after the forced migrations of the slave trade placed them in biologically and socially hostile new worlds. This framing of sickle cell anemia in relation to African origins represented something of a political departure for the Party. One way that the Party distinguished itself first from black cultural nationalism and later from the Panthers in New York City was by arguing against idealizing “Africa” as the basis of African American political culture. As the historian Robert Self puts it, the Party felt that “Black people suffered as a nation, but their homeland was not Africa.”72 Yet, in its understanding of the stakes of sickle cell anemia, Africa played a central and formative role.
While it drew on evolutionary theory, the activists’ account was most centrally a sociopolitical one that subsumed biology under the larger veil of black suffering, in the process analogizing slavery and sickling.73 Sickle cell anemia symbolized the injurious consequences of slavery but, importantly, with this narrative, also came into view as a symbol of black perseverance in the face of the basest practices of racial domination.74 Or, as Williams asserted, invoking a social Darwinist maxim, sickle cell anemia was evidence that “only the strong survive.”75
The conservative Memphis congressman Dan Kuykendall invoked a similar paradigm during hearings for the National Sickle Cell Anemia Bill. In a move that mirrored President Nixon’s appropriation of black power as black capitalism, Kuykendall argued, “Being a carrier of the sickle cell trait is not a weakness. It is not a stigma. Actually, it is a historical strength. The sickle cell trait is a historical protection from malaria.” Overstating his case, he continued, “An individual who has sickle cell trait and desires to become a missionary in Africa would never have to worry about malaria. He is stronger in that area than other people are, and I wonder why we do not use some of the strengths and the positive aspects of this trait instead of emphasizing the ‘disease.’”76
The Party’s construal of sickle cell anemia as a somatic sign of the fortitude of slave descendents reversed pejorative associations between blackness and sickling that had existed since the disease’s discovery in the blood of an Afro-Caribbean man by the physician James B. Herrick in 1910.77 In the early twentieth century, racist physicians and scientists found in sickle cell anemia scientific proof of the immutable peculiarity of African Americans and biological justification for de jure racial segregation in the United States.78 In 1943 the southern physician A. G. Ogden argued that the fact of sickle cell anemia—then believed to be transmitted by a dominant genetic trait—suggested the need for antimiscegenation legislation. “Intermarriages between Negroes and white persons directly endanger the white race by transmission of the sickling trait. . . . Such intermarriages, therefore, should be prohibited by federal law,” Ogden wrote.79 Several years later, whites who opposed civil rights for African Americans invoked sickle cell anemia to support their argument that blacks should be returned to Africa, rather than have full citizenship extended to them in the United States.80
In the ideological hands of the Party, however, a disease that for decades had been invoked to support specious theories of African American racial inferiority became the basis for a new (disease) identity for blacks. Sickle cell anemia was transformed from stigmata of biological inferiority to exemplar of black fortitude.
In the Party’s sickling discourse, resilience in the face of protracted black suffering in turn became a resource in developing experiential knowledge.81 The Party’s valorization of popular wisdom established black and poor people as the definitive authorities on their healthcare needs and on the impediments racism and economic inequality posed to fulfilling these needs. The Party conveyed the primacy of experiential knowledge through the “illness narratives” of disease sufferers.82 First detailed by the medical anthropologist Arthur Kleinman, “illness narratives” are patients’ interpretations of their infirmities that impart “meaning” and “coherence” to the experience of suffering.83 The illness narratives disseminated by the Party were primarily rendered in the generic form of the interview.84 A summer 1971 issue of the Black Panther featured interviews with two African American women, under the title “America’s Racist Negligence in Sickle Cell Research Exposed by Its Victims.”85 Bay Area resident Ozella Keys, described as “a victim of sickle cell anemia,” had been an aspiring nursing student before being informed that she had the genetic disease during a standard preadmission medical exam.86 (She was subsequently denied admission to the nursing program by administrators wary of bearing insurance liability should Keys take ill while enrolled in their school.)87 The second woman, Brenda Pennington, a nurse in a San Francisco hospital, carried the sickle cell trait. Although the women’s interviewer is not identified, they are shown holding plates of food, one on each side of Seale, who embraces them.88 Endorsed by Seale, Keys and Pennington are presented, on the one hand, as respectable homemakers and sympathetic sickle cell anemia victims and, on the other, as authorities on the disease in their own right.89
In the interview, Pennington, a carrier of the typically asymptomatic genetic trait, and Keys, a sickle cell anemia sufferer, both recounted painful interludes. Pennington remembered how several years prior her carrier status had resulted in her being hospitalized with excruciating aches in her stomach and abdomen.90 Keys, for her part, described years of suffering and the numerous, mostly ineffective, treatments she had been given in hopes of quelling her pain, including oxygen via a “nasal catheter,” “strong narcotics,” and “sodium bicarbonate . . . to thin out the blood.”91 Voicing an experience consistent with the historical use of blacks as human research subjects, she reflected that an experimental “urea treatment” produced a “terrible reaction” that was more distressing than the sickle cell crises it was intended to allay.92 Quoted at length on the topic of the poor medical care they received, the women described their erratic courses of treatment and unpleasant interactions with unenlightened doctors. Pennington recounted that the medical staff was befuddled by the source of her suffering during a hospitalization for pain:
They took my temperature and blood pressure . . . and did some blood work. . . . I heard people talking about [“]it was probably her gallbladder, we might have to do surgery; or, it might be her appendix or she might have an intestinal obstruction.[”] . . . It was [on] the second day that somebody said [“]well[,] why don’t we do another blood test.[”] And that’s when they found I had the trait.
Pennington’s pain was eventually determined to be a consequence of the presence of the sickle cell trait, a state that does not frequently result in suffering for the carrier. This episode caused her to contemplate—both as a patient and a nurse—the shortcomings of medical education. Thinking back to her own training, Pennington remembered only a brief mention in a textbook of sickle cell disease “in the end of a chapter on hematology, there was a paragraph, two lines maybe.” Likewise making a case for the healthcare system’s disinterest in black vitality through the lens of her personal experience, Keys suggested that the therapies used to treat sickle cell anemia were at best, speculative—doctors “don’t know the accurate dosage; it’s just an experiment,” she commented—and at worst, reckless.93
The Party circulated other accounts of sufferers lamenting the headaches, chronic fatigue, nosebleeds, relentless pain, disability, and death caused by sickle cell anemia and decrying victims’ often harrowing interactions with physicians, hospitals, and the healthcare state. These included an interview with Glenda Cotton of Detroit, Michigan, whose crises persisted despite the consultation of more than twenty different doctors, and another with Otistine Jones, the mother of a boy with sickle cell anemia disease, who was frustrated by the “casual” manner in which doctors responded to the gravity of her son’s terminal genetic disease. Ella Bea Munson recounted the experiences of her eleven-year-old son, Woodrow, who, having recently succumbed to sickle cell anemia, could no longer narrate his life as a patient.94 A photograph of Woodrow lying in an open coffin, which ran together with the Party’s interview of Munson, visually alluded to the violent murder in 1955 of another boy, Emmett Till, images of whose battered, swollen body circulated via an iconic postmortem image in the black press. With this photographic analogy, the Party bolstered its accusations of health neglect as racial genocide while linking its sickle cell anemia campaign to the broader fight for racial justice in the United States.
With first-person accounts, the Party championed poor blacks as the real experts on sickling. In telling their accounts, Keys, Pennington, Jones, and others gave narrative coherence to their experiences as sufferers in a manner similar to that described by Kleinman. Yet this meaning was epigraphically shaped by introductory comments that preceded each published illness narrative, so that these accounts of pain and untimely death spun out from the individual to the collective. Distinctively for the Party, these individual sufferers’ accounts were made to stand in for all sickle cell victims and for the well-being of black people, by and large. As the preface to one interview announced, these depictions of sickle cell suffering were concomitant articulations of a more general “lack of understanding [of] and concern for the welfare of Black people.”95
Kleinman distinguishes “illness” from “sickness” and “disease”: illness refers to how a sick person and the community, broadly conceived, “perceive, live with and respond to symptoms and disability,” while the anthropologist uses “disease” to describe the “narrow” technical or biological understandings of bodily infirmity most often held by medical professionals.96 The third concept, sickness, refers to “the understanding of a disorder . . . in relation to macrosocial (economic, political, institutional) forces.”97 Through its sickle cell education, the Party expressed a social health frame similar to Kleinman’s notion of sickness. Not only was the individual body indexical to the body politic, but sufferers’ bodily pain was situated within a matrix of macrosocial causes and consequences, elaborating discrete illness into social sickness and offering a political diagnosis. We might thus understand one undertaking of the sickle cell anemia initiative as the valorization of “illness narratives” and their subsequent translation into “sickness narratives.”
Conveyed through both illness and sickness narratives, the experiential knowledge garnered through individual sickling and collective suffering and exacerbated by institutional racism and economic exploitation established African Americans as privileged authorities on the terms of their healthcare needs and rights. In this regard, the “freedom” to which Seale referred in his television appearance was a freedom to lay claim to sickle cell anemia: to assert a unique understanding of what it means to suffer a “crisis,” both literally and figuratively; to demand adequate treatment and declaim medical inequality; and to redefine the association between race and disease from biological inferiority to discrimination and neglect.
The populism of the Party’s sickle cell education was mirrored in the most practical facet of the campaign—the free screening it offered for the genetic disease. When in 1974 members of the Houston chapter’s health cadre trained students at Texas Southern University to administer sickle cell anemia screening tests, they were seeking to transform lay people into community health workers.98 With this process of knowledge transmission, repeated by Party chapters nationally, the activists aimed to cultivate “revolutionary medicine” by demystifying the “bourgeois” medical professions.99
A signal feature of the Party’s sickle cell anemia initiative, the democratization and deprofessionalization of sickling diagnosis, was made possible by recent technological developments and began on the recommendation of a member of the Party’s Seattle chapter. In 1969 Ortho Diagnostics released the Sickledex kit, a simple screening test for sickle cell anemia.100 Requiring only a finger prick of blood, Sickledex was not as invasive as the electrophoretic analysis, which necessitated a larger volume, usually drawn with a syringe. Screening with Sickledex, which detects hemoglobin S, the abnormal form of the blood molecule that results in sickling, involved the following: using a lancet, a health worker made a small puncture on a patient’s fingertip to obtain a small sample of blood. The blood was drawn up into a glass pipette and combined with a reagent powder that had been dissolved in a chemical solution. After approximately five minutes, the density of the blood-reagent liquid was visually assessed by placing the glass tube in front of a sheet of paper printed with black lines. If the liquid was opaque—that is, if the black lines were not visible through the tube—the presence of hemoglobin S (and thus either sickle trait or sickle cell anemia disease) was indicated. If the sample became translucent, such that the black lines in the background could be seen, neither sickle trait nor disease was present in the sample.
Prior to using Sickledex technology, Black Panther chapters that conducted sickle cell screening used a traditional method. Small stressed that at Berkeley’s George Jackson PFMC the activists used an electrophoresis machine solely to analyze blood samples. For remote events, such as large-scale screening at parks, the organization used the Sickledex test that was introduced by Valentine Hobbs, the Seattle Panther who had launched the Sydney Miller PFMC in that city.101
Still widely employed today, Sickledex test kits were used extensively in the 1970s by the Panthers, community clinics, public health agencies, and hospitals. Because, as a pharmaceutical newsletter explained, “no special skills [were] required in performing or interpreting the . . . test,”102 the introduction of Sickledex accommodated the Party’s objective of transferring expertise from physicians, nurses, medical technicians, and other professionals “to the masses.”103 In addition to its accessibility, this test was significantly less expensive than the electrophoresis technique popularized by Pauling beginning in 1949.104 Whereas hemoglobin electrophoresis cost between ten and twenty dollars per use in the 1970s, the new tests were about fifty cents per use on average.105 Sickledex kits were even less expensive when purchased in the large quantities required by the Party and were often sold to the activists at a reduced price or donated outright. Small’s responsibilities as director of the Panther’s sickle cell foundation included meeting the management of Bay Area medical supply companies to make such arrangements.
After Sickledex’s introduction, sickle cell screening became a portable enterprise because the analysis did not have to be undertaken in a medical lab or a hospital (as was the case with large electrophoresis apparatuses). Genetic screening, as a result, now could be carried out by the Party and others in untraditional settings, ranging from the private sphere to the grand public occasion. In New York City, Oakland, Chicago, and a few other cities, the Panthers embarked on local “outreach programs” in which “trained teams of community workers” comprising health cadre and volunteers traveled door-to-door administering free genetic screening tests to blacks, “in their very homes.”106 Free sickle cell screening was also available at nine clinics: Houston, Chicago, Berkeley/Oakland, Los Angeles, Portland, Seattle, Boston, Philadelphia, and New Orleans.107 Staff from Chicago’s Spurgeon “Jake” Winters PFMC additionally implemented an extensive school-based screening program with the express consent of the local board of education.108 The Seattle chapter even screened inmates at Walla Walla State Prison for the sick-ling trait and disease.109
By 1972 the Chicago Party purported to have tested more than 2,500 students in five public elementary schools. Of these, 169 students were identified as carriers of the recessive trait and 2 were diagnosed with sickle cell anemia disease. All of the students were given referrals for genetic counseling sessions, during which the implications of the sickling trait were discussed and, in cases of an anemia diagnosis, treatment options recommended.110 By February 1972 the chapter claimed to have screened, all told, more than 7,000 Chicagoans for sickle cell anemia, identifying more than 600 with the trait or disease. Former Party member JoNina Abron recalls that the Chicago Party chapter tested close to “600 children” in one instance. This chapter subsequently administered Sickledex tests to students at additional elementary schools, a high school, and a junior college in the greater Chicago metropolitan area.111
In addition to the testing it offered at residences and chapter clinics, the Party’s adoption of Sickledex also facilitated free, on-the-spot genetic screening at large gatherings such as protests, rallies, and conventions. In these settings, the cause of sickling assumed deeper political resonance because the testing was often discharged alongside electoral advocacy and organizing. In June 1972 the Party sponsored the “Anti-War, African Liberation, Voter Registration Survival Conference” at Oakland Auditorium. Befitting the Party’s multiagenda strategy at this time, advertisements for the event announced that genetic screening (“10,000 Free Sickle Cell Anemia Tests”) would take place alongside the political mobilization planned for the day.112 By their own accounting, Party chapters regularly administered thousands of free screening tests at public gatherings such as this.113 The Portland chapter, for example, gave sickle cell anemia tests to more than two thousand people. Of these, one hundred tested positive for the trait and four for sickle cell anemia. These large-scale and, at times, theatrical events fostered awareness of the disease (and the activists’ sickle cell anemia campaign) as well as support for the Party’s broader spectrum of “serve the people” initiatives, to the consternation of state police and federal authorities that sought to discredit the Panthers by dampening the public’s enthusiasm for its battery of community service programs.
For the Party, Sickledex technology was paradoxically both an efficacious vehicle of its health politics and the source of some of the most vehement criticism of its sickle cell anemia campaign. Although people tested for sickle cell by the Party received almost immediate confirmation of their positive or negative result, the test did not distinguish between a positive result for the typically asymptomatic trait and a positive result for the lethal sickle cell anemia disease. (Drawing this distinction required subsequent hemoglobin electrophoresis analysis.)114 In retrospect, some have charged that the Party’s reliance on this test produced confusion and anxiety among blacks; yet others, from interested observers to former Party members and their allies, maintain that the health activists brought needed attention to sickle cell sufferers.
The Panthers devised the sickle cell anemia campaign to counteract the neglect of the disease by mainstream medicine and to address the substandard and at times insensitive care its constituencies usually received. Accordingly, the Party was deeply invested in ensuring that it provided accurate testing (although its plans for reducing or eradicating sickle cell anemia were less clear).115 To this end, the instruction of Party rank and file in the proper use of screening kits and the necessity of electrophoretic follow-up in positive cases was a primary intent of Small and Henry “Smitty” Smith’s tour of Party chapters’ clinics.116 Several Party clinics owned or had access to electrophoresis equipment for conducting supplementary analyses of Sickledex results. After mass testing events in Oakland and Berkeley, Party health cadre transported positive tests “back to the [George Jackson People’s Free] Clinic” where “Smitty” made finer-grained analysis with the chapter’s “own electrophoresis machine.”117 Smitty was also the Oakland chapter’s genetic counselor.118 In a recent interview, Seattle’s Hobbs stressed that the Panthers took their role as genetic counselors quite seriously: “Genetic counseling was in [sic] important component of the clinic. We advised patients and relatives at risk of an inherited disorder of the consequences and nature of the disorder, the probability of developing or transmitting it, and the options available to them in terms of managing and preventing it.”119
The Chicago chapter owned two electrophoresis machines, and the People’s Free Clinic in Seattle had one device on its premises.120 Portland’s “tiny, but well-stocked backroom laboratory” was capable of extensive chemical analysis.121 Davis, laboratory director of nearby Emmanuel Hospital, helped Ford establish health services in Portland, with “a special emphasis on sickle cell anemia,” and arranged for the clinic to have both Sickledex and electrophoresis testing capabilities.122
In Chicago the Party was lauded for being more attuned to the nuances of the genetic screening, more rigorous in the notification of screening results, and more diligent in the provision of genetic counseling than local public health authorities. In 1972 a story by the journalist Edwin Black in the Chicago Guide (now Chicago Magazine) suggested that the Party’s sickle cell anemia campaign was a model for the city’s board of health to follow. The health agency had come under fire for not informing the individuals it screened that they carried the sickle cell trait; authorities reasoned that there was no need to pass on information about a recessive trait that seldom caused discomfort or illness.123 A “prominent Chicago research physician” quoted in the article compared the health agency’s practice of “non-notification” to the Tuskegee syphilis experiment that had come to light in a July 1972 exposé in the New York Times two months prior. He stated, “A large body of . . . expert public opinion within the healthcare profession . . . is persuaded, as I am, that it is no accident that these people were used for the syphilis thing, or that race is unrelated to the lack of sickle-cell programs.”124 The agency eventually reversed its “non-notification” policy because, in the words of one board executive, “the Black Panther program ha[d] forced the city into it” by embarrassing them with its success.125 “I don’t know how complete the Panther program was,” he continued, “but they were sincere and apparently doing a job well enough to make an impact upon people.”126
Evidence of at least some due diligence and success on the part of the Party notwithstanding, critics have charged that genetic screening programs did more harm than good. The sociologist Troy Duster singled out the Bay Area Panther screening programs as guilty of disseminating inaccurate information about sickle cell.127 Given the ad hoc nature of the Party’s genetic screening program, errors were certainly made in the interpretation of results and with post-test follow-up. However, as the social and legal theorist Dorothy Roberts has clarified, it was the large public health screening programs that generated inaccurate information and subsequent distrust during this period.128 Roberts writes that public health clinics “often provided no [genetic] counseling, there was rampant confusion between carriers of the trait and those who had the disease. Many people who had only sickle-cell trait were mistakenly convinced that their health was in jeopardy.”129 Inaccuracies were characteristic of many sickle cell screening programs of the time, including the community clinics, philanthropies, hospitals, and public health systems that relied on Sickledex for sickle cell screening.130 The physician and medical historian Howard Markel significantly attributes the misinterpretation of results to the technical limitations of Sickledex and notes that such errors of interpretation were pervasive in this period.131 Thus the Party’s genetic screening program was neither the only one to suffer from inaccuracies nor the most egregious case. Yet in the context of other worrisome events in the 1970s lying at the nexus of race, class, gender, and the body, including incidents of workplace discrimination against sicklers, the revelation of the Tuskegee study, and reports of the forced sterilization of black women, the errors and misjudgments committed by many of the organizations and agencies that ran genetic screening programs were a legitimate and real cause of concern for some African Americans.
The Party nevertheless was a key player in creating critically needed public discourse about the disease, as former Party members attest.132 Observers and former allies concur. The pioneering physician Bert Lubin, a longtime Bay Area resident, who is presently director of Children’s Hospital and Research Institute in Oakland, where many recent advances in treatment for sickle cell anemia have been made, asserts unequivocally that “the Panther’s sickle cell program was a good thing. It opened people’s eyes.”133 Davis, reflecting on his collaboration with the Portland Party, sums up that the screening initiative was a “very positive thing” for the black community.134 On balance, the Party’s sickle cell anemia campaign of educational outreach paired with genetic screening was constructive.
Sickle Cell “Crisis”
It was also contested. Both the praise and the criticism the Party faced suggests how controversial and also how powerful the issue of sickle cell anemia had become in many quarters. In the early 1970s philanthropists, African American cultural outlets, legislators, and the Nixon administration competed with the Party in the scramble to design a strategy to eradicate sickle cell anemia and, by association, to show support for black communities. The historian of medicine Keith Wailoo writes that the sickling crisis “came to represent the failures of medicine to address suffering, particularly in the black community . . . the crisis would become a key feature of the clinical and social portrait of sickle cell anemia.”135
Not coincidentally, what might be expressed as the diminishing of the Party’s ideological monopoly over public sickling discourse coincided with its evisceration at the hands of the Federal Bureau of Investigation’s counterintelligence program, or COINTELPRO. With this concerted program of political repression, the FBI marshaled electronic surveillance, harassment, and a climate of paranoia to cripple the efforts of organizations that had been identified as “black hate groups.”136 COINTELPRO began in the mid-1950s as a “new phase” of an existing program devoted to the surveillance of radicals. From August 1967 onward, it focused specifically on black radical activists and black nationalist organizations, including the Party.137 By 1968 the Party was such a cause of concern to FBI director J. Edgar Hoover that he used a public forum—the front page of the New York Times—to denounce the Party as “the greatest threat to the internal security of the country.”138 A 1969 FBI directive revealed that Hoover even instructed Chicago and San Francisco Bay Area agents to “‘eradicate [the Panthers’] “serve the people” programs’” that he believed shed a positive light on the group.139
The FBI worked with local police and bureaucracies in its campaign to discredit the Party. Party health clinics came under the scrutiny of local public health authorities allegedly concerned with unsanitary conditions and inadequate medical facilities. The Spurgeon “Jake” Winters PFMC in Chicago, for example, received a visit shortly after it opened in December 1969 from local health officials who threatened to close the clinic, “charging numerous building and Board of Health violations.”140 Former Party chief of staff David Hilliard recalled that the Party’s free sickle cell anemia screening was “crippled [when] the FBI urged Oakland police to arrest Party members for making unlawful solicitations and planted news stories trying to discredit the program.”141 Police harassment and raids frequently resulted in ransacking of the Party chapters’ health facilities, during which supplies were damaged or destroyed and medical equipment was broken, as was the case at the Chicago and Los Angeles clinics.142
Funds for the Party’s social programs were acquired partly through direct solicitation or through the sale of the group’s newspaper.143 The FBI stifled the Party’s funding sources for its health programs. The Black Panther was especially targeted because of its extensive national circulation, because it served as an undiluted vehicle for disseminating the Party’s political positions, and because it was a principal source of the Party’s operating budget.144 In August 1972 four members of the Southern California chapter were arrested for allegedly soliciting donations for the sickle cell anemia campaign. According to the Party newspaper, television news in Los Angeles reporting on the incident failed to identify those arrested as Party members. Instead, they were described as “fraud operators,” a depiction that in effect criminalized the Party’s health activist work.145 There is evidence to suggest that the FBI was behind this crackdown. The FBI “urged local police in Oakland and surrounding communities to arrest for unlawful solicitation Black Panther Party [members] who sought donations for the [sickle cell anemia] program in public places.”146 In the Bay Area, Party members continued to be arrested for solicitation “even after a San Francisco solicitation ordinance . . . was declared unconstitutional by a California court.”147 Moreover, the FBI instructed members of the television and press media “to publish articles and broadcasts falsely attacking the legitimacy” of the sickle cell campaign to “reduce contributions to the program.”148 In such a climate, the People’s Sickle Cell Anemia campaign was easily undermined.
The political value of the sickle cell crisis was not lost on the administration of President Richard Nixon.149 In February 1971, in a health address to Congress, Nixon declared it “a sad and shameful fact” that investigations into the causes of “a most serious disease which occurs in the black population . . . have been largely neglected throughout our history.”150 He also proposed that this oversight be rectified with a “fivefold” increase in the budget for the research and treatment of sickle cell anemia.151
Having previously identified the dismantling of the Office of Economic Opportunity (a driver in the War on Poverty) as a major feature of his presidency, and with the full intention of asking for reductions in federal funding to the National Institutes of Health in his next budget, President Nixon’s newfound concern for the disease amounted to a calculated political strategy to demonstrate his administration’s attention to the needs of black communities while maintaining manufactured fiscal scarcity. Nixon offered narrow biological citizenship instead of economic access or equality. Donna Spiegler, a staffer for Merlin DuVal, Nixon’s assistant secretary of health and scientific affairs, frankly asserted that the president’s support for sickle cell anemia “was a gimmick for Nixon to get the black vote” for a second term in office.152 As Wailoo elaborates, in “championing both the war on cancer and (surprising both his supporters and opponents) new research on sickle cell anemia in his February 1971 health message, [Nixon] gained positive political attention for these bold initiatives while remaining true to his conservative ideals.”153
Considering the bill that would become the 1972 National Sickle Cell Anemia Control Act, Congress held hearings during which black athletes, medical professionals, civil rights activists, and legislators lobbied on behalf of the new law.154 The Black Panther Party was notably absent from these deliberations. During these hearings, many witnesses referred to the funding disparities between sickle cell anemia and other genetic diseases identified by Scott in his JAMA article. The bill’s cosponsor, Senator Tunney, specifically referenced the Scott paper on the floor of the Senate.155
In May 1972 Congress passed the National Sickle Cell Anemia Control Act, which allotted $155 million in funding for sickle cell anemia over three years for the research and prevention of the disease. President Nixon signed it into law.156 The May 27, 1972, issue of the Black Panther responded to the new law in this way:
[Nixon] recently signed a bill that allocated millions of dollars toward the “eradication” of Sickle Cell Anemia. We are not fooled by “Nixon’s Sickle Cell Bill,” for we know that what we will see is the phoney Sickle Cell organizations getting even more money (if in fact it is given), with little change in the people’s condition in regard to Sickle Cell Anemia.157
Scathing critiques of the numerous foundations that had sprung up to combat sickle cell anemia also ran in the Black Panther. Panther leader Brown complained that with the Party’s efforts “being duplicated [by other organizations], our money and energy were being so drained, the impact of our Survival Programs [was] inevitably . . . diminished.”158
Unsurprisingly, then, the Party condemned the efforts of other organizations. The National Sickle Cell Disease Research Foundation came under fire in the Black Panther for holding its April 1972 convention in a tony New York City hotel, “far from the reach of the masses.”159 The Party believed that successful sickle cell anemia prevention efforts should emerge from and remain within poor black communities, rather than originate in the established citadels of philanthropy and medicine. Aside from being out of touch with poor blacks, because the foundation operated with federal funds, it also represented to the Party the state’s effort to co-opt both the disease and its waning inability to “spin” the disease ideologically. (However, the Party was not opposed in principle to alliance with philanthropies, such as the one created with Williams’s Mid-Peninsula Sickle Cell Anemia Foundation).160
Also irksome to the Party were the sickle cell efforts initiated by soul music–format radio stations. The Party criticized the Boston station WILD, which sponsored an on-air fund-raising drive by “begging for research funds with cute slogans like ‘It’s Sickle Cell Time ya’ll.’”161 This commercial radio campaign sandwiched solicitations for sickle cell anemia research between R&B ballads and funk songs, trivializing the political stakes of the disease that the Party was at pains to emphasize.
All of the contenders in the sickle cell crisis sought to deploy the disease politically, but toward ideologically different ends. All recognized that sickle cell anemia, by virtue of being a “black disease,” could be used to highlight race-based medical neglect or to mollify political differences. African American philanthropies and cultural outlets, for example, employed what might be termed a “categorical” standpoint. Sickle cell anemia was a cause of concern inasmuch as it was a “black” disease.162 For its part, the federal government sought to address a single angle on sickle cell anemia that might be understood as a “representational” standpoint. The Nixon administration hoped that its fiscal support for sickle cell anemia research would be seen as support for the black population writ large and, moreover, might translate into improved approval ratings and votes despite the fact that the president’s other policies concurrently undermined the health of African American communities in many other ways. As Tapper keenly observes, the administration “was clearly more inclined to address the government’s neglect of specific segments of the population through genetic screening—a relatively inexpensive strategy—than to work to transform the social and racial hierarchies that produced the neglect in the first place.”163 Of course, the Party was concerned not merely with combating and potentially curing sickle cell anemia but also with remedying the inequalities to which Tapper alludes. Although elements of the displeasure the Party expressed in its newspaper over the encroachment of politicians and philanthropies on its issue might suggest territorialism or even sour grapes, something far more crucial was at stake for the organization. The categorical and representational approaches to the sickle cell anemia crisis stripped away the social health frame in which the Party contextualized the disease (and potentially also one of its primary bases of support from black communities).
Economic and racial inequities were precisely what were at stake for the Party, and neglect of sickle cell anemia was simply the tip of an iceberg of oppression. Yet, because the Party’s sickle cell anemia campaign had focused so centrally on “neglect”—the failure of a capitalist system to provide for poor and oppressed communities—the campaign lost some of its political potency when this disregard was redressed by the state and philanthropies. Moreover, as sickle cell anemia was transformed into a metaphor of black American experience, both politicians and more centrist civil rights organizations like the National Urban League and the NAACP appropriated many of the Party’s claims about the link between social status and health status.164 At the same time, a growing number of prominent African American physicians began to charge that the federal government’s response to the sickle cell crisis amounted to a “political ploy,” one that occluded the deeper structural issues affecting black health, such as a lack of access to medical care and impoverished living conditions.165 As a concerned physician put it, “You need to upgrade the medical care for the population from which these patients come.”166 In light of this incorporation of its rhetoric into mainstream discourse, on the one hand, and the dismantling of its social health frame, on the other, it became difficult for the Party to employ sickle cell anemia as a mobilizing medium for radical ideology.
To be sure, the Party played an important role in bringing sickle cell anemia to the attention of African American communities and likely influenced the Nixon administration’s decision to allocate significant federal resources for research on the disease. But this allocation of state resources also served to neutralize the Party’s larger political critique. The campaign was thus an object lesson on the challenges faced by African American health activists in deploying a social health frame by yoking their cause to larger social issues. Yet by 1974 the Party’s perspective on sickle cell anemia had also become less radical.167 Perhaps in response to criticism about the dangers of sickle cell testing, perhaps in response to the receding moral authority and clearly with an eye toward getting local, state, and federal funding for its community service programs, toward the mid-1970s the Party began to emphasize its collaboration with medical professionals from “accredited hospitals,” the “mandatory” number of trained medical professionals needed to run its clinics and sickle cell anemia screening program, and its diligence in taking health background information from people tested for the disease.168 In the Party-edited special issue of the CoEvolution Quarterly, under the section heading “Volunteers,” the Party emphasized that those who donated their time were trained medical professionals or “have received training in Sickle Cell Anemia testing from accredited hospitals.” This section also highlighted the fact that a Party sickle cell anemia program required “two doctors who consult with local foundations” and who “also provide the Foundation with liaison hospitals which conduct Sickle Cell research and which may be willing to donate some of their facilities and equipment free of charge to the Foundation.”169 The Panthers’ sickle cell anemia campaign, which initially stressed the importance of lay knowledge and participation, was becoming professionalized. The organization still attempted to offer medicine for the people, but not necessarily by the people. The critique of expertise and biomedical authority, which the Party had tethered to the sickle cell anemia campaign, became disassociated from it, just as the critiques of racism and capitalism had been. By 1975, when members of the Oakland Party participated in a community health fair alongside the American Cancer Society, the Alameda County Lung Association, and the American Red Cross, its sickle cell anemia campaign was mainstream and its social health frame was fragile.170