Destigmatizing: Lessons from the history of HIV/AIDS

By Jeannie Ludlow, PhD, ACP Board Member

On July 17, I heard Sir Elton John interviewed on NPR about his new memoir, Love Is the Cure. In the interview, he talked about how his own life, particularly his struggle with addiction, has been influenced by his work to destigmatize HIV/AIDS. In particular, he credits his friendship with Ryan White with inspiring him to overcome his cocaine addiction and put his energies and talents to work in support of people with HIV/AIDS. I was particularly struck by John’s final statements, in which he made a direct connection between stigmatization and the failure of government responsibility to help and support its citizens.

For those who may not remember: Ryan White was an Indiana teenager who was diagnosed as HIV positive in the mid-1980s. After his diagnosis, he was denied admittance to school, even though doctors, county health officers, the Indiana state health commissioner, and the CDC were very clear that he posed no risk to the health or safety of other students. The school system administrators, parents, and teachers rallied against White, and much of his 7th grade year was spent at home. There was a series of lawsuits, which the school system repeatedly lost and then appealed. At the same time, White and his family were stigmatized in town: people shouted hateful things to them; people on his paper route canceled their subscriptions because they didn’t want to touch papers he had touched; when White was allowed to go to school on Feb. 21, for one day, almost half of the students in his school were kept at home by their families. In March, a group of citizens held an auction in the school gym to raise money to try to keep White out of the school. The next year, White attended the school but was ostracized. He was not allowed to take P.E., had to use a separate restroom, and had to eat with disposable utensils. White and his family were subjected to stigmatization until they moved to a new town, where White attended high school and became a national spokesperson for HIV/AIDS awareness.

White’s story stands as a strong statement about the damage stigmatization can do, not just to the stigmatized individuals, but to all who are touched by its influence, and about the power of destigmatization. When White was diagnosed, HIV/AIDS was highly stigmatized and misunderstood. White’s story got the attention of many powerful people, who made sure we all understood the effects of stigmatization on White and his family. In part through this public sharing of White’s experiences, we learned to see HIV/AIDS differently. After his death, President Reagan wrote, “We owe it to Ryan to make sure that the fear and ignorance that chased him from his home and his school will be eliminated. We owe it to Ryan to be compassionate, caring and tolerant toward those with AIDS, their families and friends. It’s the disease that’s frightening, not the people who have it.”

 While I certainly do not want to seem to compare abortion—a safe, legal medical procedure—with HIV/AIDS, I do want to think about what we in the abortion rights movement can learn about destigmatization from Ryan White’s story. Here is what I’ve learned about destigmatization from revisiting Ryan White’s story and from Sir Elton John’s interview:

 1. Call out stigmatization: make it visible and critique it publicly. If people had not said, loudly, that what the community was doing was unjust and inappropriate, Ryan’s experience would not have had the culture-shifting effect that it did. We need to say it loud when people—whether they identify as prochoice oR prolife—say stigmatizing things.

 2. Stand united: have spokespersons who refuse internalized stigmatization. Although the phrase was used often in the news, White and his family refused to speak of him as an “innocent victim” of HIV because that language was used to imply that gay people with AIDS were guilty. His mother says that he often said, “I’m just like everyone else with AIDS, no matter how I got it.” Similarly, we need to refuse to separate out “innocent” abortion patients (victims of violence, those with anomalous fetuses or severe health problems) from all other abortion patients.

 3. Use our biggest voices: have high-profile allies who are not afraid to speak truth to power.  These should include people in all walks of life, particularly those in the arts and those with public platforms from which to speak; Ryan White’s public champions included his family, friends, and doctors, certainly, and also Elton John, Michael Jackson, Phil Donahue, John Cougar Mellenkamp, and Surgeon General C. Everett Koop. We need our biggest voices to start addressing stigmatization, NOW!

 4. Focus on justice: insist of the rights of the stigmatized to live without fear, discrimination, and judgment. White’s champions all insisted that he, like all persons with HIV/AIDS, was entitled to live a life free of these forces. We need to keep our message focused on the injustice of stigmatization. No more excusing stigmatization on the grounds that it is “someone’s personal belief.”

 5. Follow the money: hold government officials responsible for their failure to act with care and compassion. In his interview, Sir Elton John says that he wrote a letter to Florida Gov. Rick Scott, when Florida cut funding for AIDS program. Apparently, someone suggested, in response, that John hold a concert to raise money for the programs. John’s response: “It’s not my job to [fund a state’s AIDS program]. It’s the government’s priority to do that. . . . It’s their responsibility; they need to do what’s right.” We must not allow our government to make decisions that strengthen social stigma. We must follow the example of John and of the women in Michigan who are holding government officials responsible for doing their duty to their citizens—all of their citizens.

Ed. Note: There is a related blog on this topic at RH Reality on “Coming Out” by Kai Gurley.