Ryan White's Story Exposed—and Obscured—the Truth About AIDS (2024)

Since 1988, Dec. 1 has served as World AIDS Day, a day of remembrance and recognition for the tens of millions of people across the globe living with HIV/AIDS—and the tens of millions who have died from AIDS-related causes. As the concerned public marked World AIDS Day for the first time 35 years ago, there was little doubt that, at the time, the most famous person with AIDS in the United States, if not the world, was Ryan White.

A teenager with hemophilia who contracted HIV through contaminated blood products, White became a household name in 1985 after he was barred from attending his Indiana middle school because he had AIDS. White differed significantly from the stigmatized populations most closely associated with HIV and AIDS: men who had sex with men (MSM) and people who used intravenous drugs. As a result, he was widely embraced, rather than shunned. His celebrity only grew over the next five years as he waged a valiant “public battle against fear and hatred,” as the NBC Nightly News characterized it in 1990.

In one sense, White’s story helped change dominant perceptions of HIV/AIDS as a “gay plague” or an illness for “junkies.” Yet his story, which reached audiences far and wide and eventually inspired the federal Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in 1990, also reinforced some of the hierarchies and prejudices at the heart of the HIV/AIDS epidemic.

From an early age, Ryan White was a poster child. In March 1973, before he had turned two years old, White had served as a “poster boy” for the Howard County Hemophilia Society. He even had his picture published in his local hometown newspaper, the Kokomo Tribune. But this brush with local fame paled in comparison to the national and international renown White achieved beginning in the summer of 1985, about six months after his AIDS diagnosis.

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In late July of that year, school officials prohibited him from attending classes at Western Middle School in Russiaville, Ind. Their decision, which coincided with news of actor Rock Hudson’s bout with AIDS, captured headlines around the world and turned White into a curious kind of celebrity overnight. Ryan White had instantly attained the sort of visibility and sympathy for which so many other people with AIDS and their allies—from Bobbi Campbell to Sarah Schulman—had been petitioning since the “discovery” of AIDS in the early 1980s.

White’s high-profile case thus challenged the idea that HIV/AIDS only affected IV drug users and gay, bisexual, and other MSM. At the same time, however, the narratives surrounding White and his fight to return to school frequently distinguished between “righteous” and “unrighteous” people with AIDS.

These sorts of designations relied on and reinforced the stigmas associated with certain modes of HIV transmission, especially anal sex and intravenous drug use. “I think it’s sad that he had to catch AIDS,” one of White’s schoolmates told the Nightly News in 1985, “because it’s not his fault”—the implication being that other populations somehow deserved to be infected with HIV. For their part, members of the Indianapolis Star editorial board insisted in 1987: “[I]t is not the Ryan Whites, the innocents who contracted the disease through blood transfusions, [that] the state must guard against.” Rather, “health officials must be wary of … the AIDS-carriers who don’t give a hoot about whether they infect other people, who refuse to change their promiscuous lifestyles and refuse to take precautions.” This selective application of “innocence” worsened the stigmas associated with certain behaviors and activities and essentially guaranteed unequal health outcomes related to HIV/AIDS.

In response, AIDS activists shrewdly worked to deconstruct the very category of innocence and redistribute its benefits to all people with AIDS. Most notably, in 1988, the same year in which White appeared on the cover of People magazine for the second time, the artist collective Gran Fury—which emerged out of the AIDS Coalition to Unleash Power (ACT UP)—began disseminating flyers that declared, “All People with AIDS Are Innocent.”

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But as noble as such efforts were, they could not match the symbolic power of White’s innocence. When White passed away in April 1990, many commentators blamed his death on MSM and those who used intravenous drugs—groups that had supposedly caused or at least exacerbated the epidemic and thereby endangered “innocent” bystanders. “[M]y prayer,” one woman wrote in a letter to the Indianapolis Star, “is that hom*osexuals and drug needle users who are responsible for 94 percent of all AIDS cases will accept the responsibility for the terrible grief they bring the innocent victims of their acts—such as Ryan White and his family.”

In addition to expanding the moral and symbolic distance between “righteous” and “unrighteous” people with AIDS, White’s celebrity also worked to conceal the effects of HIV/AIDS on other communities, especially women and people of color. Although White’s case refuted the notion that AIDS was simply a “gay white man disease,” as the African American newspaper Emerge explained in 1990, it nevertheless validated conceptions of AIDS as a white disease. Yet Black, Latinx, and Indigenous people were disproportionately affected by HIV/AIDS before, during, and long after White’s story went public. In fact, White wasn’t even a particularly representative child with AIDS. In 1990, the year White died, 52% of children living with AIDS in the U.S. were Black.

Ryan White's Story Exposed—and Obscured—the Truth About AIDS (1)

In the years surrounding White’s death and elaborate funeral, the Women’s Caucus of ACT UP, Gran Fury, and other groups also drew attention to the impacts of HIV/AIDS on women. More specifically, these activists criticized the Centers for Disease Control and Prevention (CDC)’s narrow case definition of AIDS, which excluded women, among other populations. In response, the CDC finally changed its case definition to include women in January 1993, just before the inauguration of Bill Clinton. But significant damage had been done.

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As the rise of protease inhibitors and highly active antiretroviral therapy in the mid- to late 1990s made HIV/AIDS less deadly for those with decent healthcare, it contributed to the “general sense that AIDS is over,” as Yale professor Michael Warner has argued, at least in the United States. Since the late 1990s, a parallel process, the “globalization of AIDS,” has diverted attention away from America’s ongoing HIV/AIDS epidemic, which—as Northwestern professor Steven Thrasher, political scientist Cathy Cohen, and historian Dan Royles have shown—is centered primarily in communities of color and queer and trans communities.

This World AIDS Day, let us recognize all people living with HIV/AIDS and remember everyone cut down by the plague without drawing lines between the “righteous” and the “unrighteous,” the “guilty” and the “innocent.” Further, even though Ryan White died three decades ago, we must acknowledge the fact that the epidemic persists—particularly in some of our nation’s most vulnerable communities. As Gran Fury rightly proclaimed in 1990, the year of White’s death, “AIDS ISN’T OVER FOR ANYBODY UNTIL IT’S OVER FOR EVERYBODY.”

Paul Renfro is an associate professor of history at Florida State University. He is the author of Stranger Danger: Family Values, Childhood, and the American Carceral State (Oxford University Press, 2020) and The Life and Death of Ryan White: AIDS, Inequality, and America (forthcoming, University of North Carolina Press, 2024). Made by History takes readers beyond the headlines with articles written and edited by professional historians. Learn more about Made by History at TIME here.

Ryan White's Story Exposed—and Obscured—the Truth About AIDS (2024)
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