“I Am the Face of AIDS”: Ryan White and the Politics of Innocence in the History of HIV/AIDS

A nation that had ignored so many AIDS-related deaths could not ignore Ryan White’s funeral. Held on April 11, 1990, in “the gothic expanse of Second Presbyterian Church” in Meridian Hills, an affluent community just north of downtown Indianapolis, the funeral was a somber yet spectacular affair.¹The youngster from Kokomo, Indiana, had become one of the most visible faces of the HIV/AIDS epidemic after he had contracted HIV through contaminated blood products when he was 13. Ryan White lived far longer than doctors had predicted, and his death became a national tragedy. Some 1,500 mourners attended his funeral, while hundreds more, unable to secure a spot in the sanctuary, were stranded outdoors in the bitter cold and rain. Given Ryan’s celebrity status, various stars and dignitaries were in attendance, as well. First Lady Barbara Bush sat directly behind the White family, and Michael Jackson—one of the most famous people in the world at the time—sat next to Ryan’s mother, Jeanne White.² Los Angeles Raiders defensive end Howie Long, singer Elton John, and talk show host Phil Donahue served as pallbearers.³ CNN carried the 45-minute ceremony live on air, and all three major broadcast networks showed footage of the service that evening. Ryan lay in an open casket at the front of the sanctuary, his body adorned with some of the clothing and accessories he cherished—and through which he channeled his rock-star idols like Bruce Springsteen. His faded jean jacket, worn over a red T-shirt, framed his frail body, while reflective Oakley shades rested on his face.⁴

White’s elaborate funeral service was a far cry from the quiet, poorly attended ceremonies held to honor many other people with AIDS (PWAs). Some AIDS deaths were hardly marked at all. Many funeral home employees simply “refuse[d] to touch” the bodies of those who died of AIDS-related causes.⁵ Given the profound stigma attached to the living and lifeless bodies of PWAs, an AIDS Coalition to Unleash Power (ACT UP) affinity group called the Marys—taking a cue from artist and activist David Wojnarowicz—began staging “political funerals” in the early 1990s.⁶ These ceremonies reflected the desperation and abjection of the overwhelming majority of PWAs. While Ryan’s funeral had all the trappings of a formal funeral and was legitimated through powerful institutions (the church, the state, and the news media), the Marys’ political funerals were fugitive, insurgent actions intended to indict these very institutions for exacerbating the AIDS crisis.

Whereas the AIDS-related deaths of thousands of men who have sex with men (MSM) and intravenous drug users had mostly been ignored by the federal government, Ryan White’s high-profile death and funeral enabled the passage of the CARE Act, dedicated in his honor by a congressional subcommittee.⁷ And although the CARE Act helped supply desperately needed federal funding for HIV/AIDS prevention and treatment, its focus on “a politically safe symbol” also reinforced the “hierarchy of victimhood” at the heart of the 1980s–1990s HIV/AIDS crisis.⁸ “From its start,” religious studies scholar Anthony Petro writes, “AIDS was … a moral epidemic, complete with a hierarchy of victimhood that placed innocent children above implicitly guilty homosexuals.”⁹ Ryan White’s “innocence,” in other words, required the “guilt” of already stigmatized populations—especially MSM and those who use intravenous drugs.

The distinction was not just purely symbolic. While Ryan’s “innocence” pushed the federal government to act on AIDS, the “guilt” of marginalized groups fueled the urge “to punish sick people for their alleged lack of moral purity,” as one Philadelphia Daily News editorial put it. Specifically, the CARE Act contained punitive HIV criminalization and notification statutes and prohibited federal funding for needle-exchange programs. Further, Senator Jesse Helms’s (R-North Carolina) proposed (and narrowly defeated) Ryan White Amendment (Senate amendment no. 1626) would have criminalized blood donation by current or former intravenous drug users and sex workers.¹⁰ The notions of guilt that loomed over the bill also contributed to its funding issues. Though the CARE Act was signed into law in 1990, its grant program would not be fully funded until 1994. The saga of the Ryan White CARE Act thus reveals the limits of respectability politics and the politics of “innocence” during the 1980s and 1990s HIV/AIDS epidemic—and beyond.

Ryan had always been a sickly child. Shortly after his birth in December 1971, Ryan was diagnosed with severe or “classic” hemophilia, which impedes the efficient clotting of blood. At the age of five, Ryan began to receive Factor VIII injections to facilitate blood clotting and to prevent excessive bleeding. A product of the post–World War II boom in medical research, self-administered Factor VIII treatments offered tremendous hope to people living with hemophilia. But because such treatments pooled blood and plasma from thousands of donors, they posed major risks, as well. Each injection introduced the blood of thousands of people into a user’s body. As a result, by 1983 over 80 percent of those with severe hemophilia who had been treated with concentrate showed “serologic evidence of previous exposure to hepatitis B antigen,” although many “considered the risk of hepatitis to be an acceptable price to pay for the benefits of AHF concentrate.”¹¹ Ryan White himself tested positive for hepatitis B in November 1984. As HIV/AIDS spread in the early 1980s—before the pervasive use of heat treatment to eliminate HIV in the blood supply—Factor VIII represented both a “lifeline” and a potential death sentence for people with hemophilia.¹²

White spent much of 1984 in a state of pain and discomfort, and he wasn’t sure why. Twelve years old at the time, Ryan was “looking forward to turning into a typical obnoxious teenager.” But constant night sweats, diarrhea, lethargy, and stomach cramps put a damper on his transition from childhood to adolescence. After he ran a fever of 104 degrees, his mother, Jeanne, took him to the hospital in Kokomo, where an X-ray revealed that he had pneumonia in both lungs. When antibiotics failed to treat the pneumonia, Ryan was transferred to Riley Hospital for Children in Indianapolis. There, he was diagnosed with pneumocystis carinii pneumonia, a rare opportunistic infection that generally signals the presence of a weakened immune system and a more significant underlying condition. While a reliable HIV test had not yet been developed, Ryan’s hemophilia, his reliance on Factor VIII, and his pneumocystis carinii pneumonia diagnosis all indicated that he was now living with AIDS.

The American public learned of Ryan White in July 1985, when officials representing the Western School Corporation in Russiaville, Indiana, barred the teenager from attending classes at Western Middle School (WMS). The decision to deny entry to Ryan might have remained a relatively minor local controversy had it not come out just as the world learned of actor Rock Hudson’s bout with AIDS. Though Hudson had been diagnosed in 1984, news of his illness only broke in late July 1985. He thus became, as the Indianapolis Star put it, “the first person with international recognition to announce he has the disease.”¹³ Hudson’s fame made his illness noteworthy and shocking, but so too did his status as a heterosexual icon. Indeed, Hudson had long personified normative masculinity on the big screen, especially during Hollywood’s “golden age”—starring alongside Elizabeth Taylor in the epic Giant (1956) and Doris Day in several popular romantic comedies, including Pillow Talk (1959)

News of Hudson’s diagnosis heightened public interest in the AIDS epidemic and stoked fears about the disease’s movement beyond the established “risk groups” (the so-called four Hs: homosexuals, hemophiliacs, heroin users, and Haitians).¹⁴Just days after Ryan White was blocked from attending classes at WMS, the Indianapolis Star ran a front-page article (next to a story about Ryan) highlighting the public’s growing concerns about AIDS. “Now a Household Word,” the headline read, “It’s Invading ‘Straight’ World.”¹⁵ Soon, Russiaville, Kokomo (where Ryan and his family lived), and the small communities surrounding them became the subjects of national and international attention. And because AIDS was “now a household word,” Ryan White almost instantly became a household name, a widely celebrated figure with a small army backing his bid to return to school.

A lengthy courtroom battle ensued, one that dragged on into the new year. Finally, in the spring of 1986, Ryan secured the right to attend classes at WMS, a development that received considerable coverage in the news media and solidified Ryan’s status as not only a national and global celebrity, but also the face of HIV/AIDS awareness.

In the wake of his very public legal victory, Ryan and his family embarked on a nationwide publicity tour of sorts. Ryan flew out to New York City to be interviewed on ABC’s Good Morning America and to attend a benefit for the recently established American Foundation for AIDS Research (amfAR). Ryan served as the guest of honor at the lavish amfAR event, held at the Jacob Javits Center and cohosted by actress Elizabeth Taylor and fashion designer Calvin Klein. At the gala, a tuxedoed Ryan and his mother rubbed shoulders with Yoko Ono and New York’s mayor, Ed Koch, while Andy Warhol snapped photographs of the mother-son duo.¹⁶ By February of the following year (a month before the formation of ACT UP), Indiana’s health commissioner, Woodrow Myers Jr., could confidently assert that Ryan was “the best known AIDS victim in the United States if not the world”—and one who posed “the lowest possible political risk” for elected officials seeking to address the epidemic.¹⁷ Myers’s comments testified to Ryan’s growing popularity and the power of his perceived innocence, both of which would help guarantee the passage of the CARE Act following his death.

Ryan’s death and funeral in April 1990 were media spectacles long foretold. As soon as White entered the national consciousness in mid-1985, his seeming proximity to death shaped his life story. In August 1985, when White learned that he faced “several months of school conferences and hearings” before a federal court would decide whether he could return to school, NBC Nightly News reporter Mary Nissenson noted that “Ryan’s doctors say he has only two years to live, so several months seem like a very long time to him.” White’s frequent health scares—marked by lengthy stays at Riley Hospital for Children in Indianapolis—constantly reminded the public of his vulnerability and, by extension, his innocence. As the nurse for the Western School Corporation indicated in a 2011 oral history interview, “Ryan did not attend school much” because he was sick so often.¹⁸ Though Ryan’s death had seemed imminent throughout his time in the national and international limelight, he lived far longer than anyone had anticipated, a fact that only added to his legend and broad appeal.¹⁹ While visiting Southern California in late March 1990, however, Ryan fell gravely ill for the last time. He and his mother promptly returned to Indiana, and he was subsequently hospitalized at Riley in Indianapolis. He died on April 8, 1990.

Ryan’s highly publicized death and funeral helped create the political space in which the federal government would allocate much-needed HIV/AIDS funding via the Ryan White CARE Act. As Ryan lay dying at Riley Hospital for Children, the Senate Labor and Human Resources Committee dedicated the CARE Act in his honor. The committee’s formal report on S. 2240—published several weeks later, after Ryan’s death—proclaimed that “young Ryan White changed the world.” “With dignity, patience and almost unvarying good cheer,” the report read, Ryan “introduced to people across America and across the world a face of AIDS that caring human beings could not turn their back upon.”²⁰ The committee report vividly illustrated the power of White’s perceived innocence and exceptional victimhood. While “caring human beings” could apparently spurn other PWAs, they could not in good conscience ignore Ryan.

To be sure, the CARE Act was quite popular with legislators even before Ryan’s name was attached to the bill. An increasingly visible and militant AIDS movement in the late 1980s and early 1990s had prompted a stronger government response to the epidemic, particularly at the federal level.²¹ Upon its introduction in early March 1990—and before it was named for Ryan—S. 2240 boasted one sponsor and 25 cosponsors. It secured another six cosponsors in early April. But Ryan’s name and image rendered the bill all but unassailable. Calling it the Ryan White CARE Act enabled lawmakers and activists to further “sanitize” HIV/AIDS—and, in so doing, to authorize AIDS funding without incurring the wrath of antigay and antidrug forces. Indeed, attaching Ryan’s name to the Senate bill attracted additional cosponsors, thereby establishing a filibuster-proof majority that would keep the virulently homophobic senator Jesse Helms at bay. By the time the bill passed a (heavily Democratic) Senate in May, 66 Senators had cosponsored it.²²

Yet because Ryan was such a potent and popular symbol, the invocation of his name and image by federal lawmakers proved contentious. Everyone wanted to be on Ryan’s side. For Ted Kennedy (D-Massachusetts) and other supporters of the CARE Act—even activists who may have privately opposed the use of “a politically safe symbol”—that meant passing the bill in Ryan’s name.²³ For Jesse Helms and his ilk, that meant “protecting” White and other “innocent victim[s]” from MSM, IV drug users, Hollywood elites, and even certain congresspeople. Through his characteristically cruel and incendiary rhetoric, Helms sought to wrest control of Ryan’s name and image away from Kennedy and other CARE Act proponents. Although in one sense his efforts failed, given the wide margins by which the Ryan White CARE Act passed, they also revealed the limits of respectability politics and the politics of innocence in this context. Specifically, Helms correctly identified White as an exceptional PWA who helped direct public attention away from stigmatized groups disproportionately affected by HIV/AIDS—particularly MSM and those who use intravenous drugs. Through this and related observations, Helms reinforced the perceived symbolic and moral distance between White and other, more “typical” PWAs and successfully promoted policies to further police and subjugate those in the latter category.

As the Senate debated the proposed Ryan White CARE Act in mid-May 1990, Helms inveighed against “the Hollywood and media crowd,” the “homosexual segment of the AIDS lobby,” congresspeople, and other groups that he claimed were “exploit[ing]” White.²⁴ For Helms, “the cynical exploitation of Ryan White” served “to mask the political movement behind [this] legislation.” Ryan’s name, Helms told his fellow Senators and those paying attention at home, “will be invoked over and over again” by nefarious forces seeking to pass the CARE Act. “The homosexual lobby of America knew the Ryan White story was too good to pass up,” charged Helms. “Therefore, his struggle and his death could be used to frighten the American public into believing that AIDS is waiting to happen to everyone, even if they do not engage in illegal and/or immoral activity.” Although “little Ryan White was not an IV drug user [or] a promiscuous homosexual,” Helms explained, he “was portrayed as a typical victim, not the exception that he was. And the AIDS propaganda machine churned out the demand for special treatment and privileges for the kind of people who caused Ryan White’s death.” According to Helms, AIDS activists and their allies in the press, the entertainment industry, and Congress had tactically concealed “the real tragedy of the death of Ryan White”—that he “would never have contracted AIDS had it not been for the perverted conduct of people who are demanding respectability.”²⁵

Of course, Helms must have known that his cause was futile. An already popular bill, now embellished with the name of perhaps the country’s most celebrated PWA, would easily pass both houses of Congress. Yet although the strategic emphasis on a “politically safe” and “innocent” symbol may have ensured the CARE Act’s passage, it also limited the scope and scale of the legislation.²⁶ The bill, and the rhetoric surrounding it, did not address the structural causes of the AIDS epidemic—homophobia, racism, the unequal for-profit healthcare and pharmaceutical industries—nor did it fully acknowledge the ways in which the crisis disproportionately affected subjugated groups, including people of color, members of the LGBTQ+ community, and those who use intravenous drugs.

Rather, the CARE Act’s focus on sympathetic “victims” such as Ryan fortified prevailing antigay, antidrug, and racial stigmas, ultimately preserving the criminalization and abandonment of PWAs spotlighted by the Marys’ insurgent funerals. On a material level, the CARE Act’s implicit hierarchy of victimhood contributed to the act’s funding issues and enabled the adoption (or near-adoption) of punitive amendments during the CARE Act’s 1990 passage and 1995–96 reauthorization fight. While Senator Helms’s proposed ban on funding for needle-exchange programs and bleach (Senate amendment no. 1624) did not pass in 1990, Senator Kennedy’s related amendment prohibiting federal funds for only the former (Senate amendment no. 1625) did.²⁷ (Kennedy’s amendment actually reinforced an existing federal ban on needle- and syringe-exchange programs, which had been introduced by Helms in 1988.)²⁸ Similar antidrug and antigay exclusions would find their way into the CARE Act reauthorization bill in the mid-1990s.

Efforts to criminalize behaviors that might lead to HIV transmission traced back to the mid-1980s, but the Ryan White CARE Act expanded and formalized such efforts. As Dini Harsono, Carol L. Galletly, Elaine O’Keefe, and Zita Lazzarini explain, the CARE Act represented “an important milestone in the development of US HIV exposure laws.” In order to receive federal funds under the Ryan White CARE Act, states were required to establish and maintain mechanisms through which “to prosecute HIV-infected individuals who knowingly exposed others to HIV.”²⁹ Earlier state and local efforts to criminalize the potential transmission of HIV hinged upon notions of sex-crazed “HIV monsters” indiscriminately infecting “innocents.”³⁰ In the ’80s, sociologist Trevor Hoppe writes, many law enforcement officials and policymakers identified sex workers as vectors of disease who threatened the “general population,” a category that implicitly excluded gay men and other historically subjugated groups. As these actors saw it, “prostitutes were not just killing their clients[;] they were endangering the lives of innocent women and children.”³¹ The Ryan White CARE Act, and the criminalization statute tucked within it, intensified and legitimated these sorts of claims—juxtaposing “innocent” PWAs such as Ryan with the less “respectable” intravenous drug users, sex workers, and gay men who were ostensibly driving the HIV/AIDS epidemic. As Hoppe notes, “the logic of criminalizing HIV has been propelled at least in part by homophobia,” and the CARE Act reflected this logic.³²

The Ryan White CARE Act was still a monumental achievement. Inspired by Ryan White’s name, image, life story, and death, the House and Senate passed their respective bills by decisive margins. After an expedited reconciliation process, the CARE Act was signed into law by President Bush on August 18, 1990, despite the administration’s stated opposition to the “narrow disease-specific approach” taken by the architects of the House bill (HR 4785).³³ The final version of the bill authorized $882 million in AIDS funding for fiscal year 1991 and $4.5 billion in federal grants through 1995.³⁴

Yet debates over funding would persist well into the 1990s, and the full effects of the CARE Act’s draconian antidrug and antigay provisions would only become apparent in the coming years.³⁵ While prosecutions and convictions for HIV-related offenses remain relatively rare in the United States, marginalized populations continue to bear the brunt of such criminalization efforts. For instance, according to the Williams Institute at UCLA’s School of Law, Black men make up over half of all HIV-related convictions in Missouri, while Black women are disproportionately affected by HIV criminalization laws targeting sex work.³⁶

In a 1993 interview with Playboy, the playwright, activist, and ACT UP cofounder Larry Kramer expressed his admiration for Ryan White. “The person most Americans associate with AIDS is Ryan White, the Indiana boy who died of AIDS in 1990,” the interviewer at Playboy told Kramer, before asking where Ryan ranked on Kramer’s “list” of AIDS leaders, heroes, and villains. “I think little Ryan White probably did more to change the face of this illness and to move people than anyone,” Kramer replied. “People respond to courage. Ryan was courageous by confronting the issue and saying, ‘In your face, here I am, and here AIDS is. I am the face of AIDS.’”³⁷ But earlier that year, when Kramer appeared on a panel with Ryan’s mother in Hartford, Connecticut, he “said words to the effect that he was sick and tired of hearing about Ryan White,” Jeanne White later recalled.³⁸

These divergent responses to Ryan White’s story reflect the contested meanings of his life and legacy. While Ryan White helped challenge existing understandings of the 1980s–1990s AIDS epidemic, his story also reinforced artificial and arbitrary divisions between the guilty and the innocent in ways that intensified racist, antigay, and antidrug stigmas. Even after the rise of protease inhibitors and highly active retroviral therapy in the mid-1990s and PrEP and PEP in the 2010s, those enduring stigmas have continued to justify policies that make marginalized groups particularly susceptible to HIV infection. If we wish to honor Ryan White’s remarkable life, we must repurpose his story to dismantle these stigmas and the destructive policies they have spawned.

Excerpted rom The Life and Death of Ryan White: AIDS and Inequality in America by Paul M. Renfro. Copyright © 2024 by Paul M. Renfro. Published by the University of North Carolina Press. Used by permission of the publisher. 

This article was commissioned by Charlotte E. Rosen

The post “I Am the Face of AIDS”: Ryan White and the Politics of Innocence in the History of HIV/AIDS appeared first on CounterPunch.org.