Stigma is like a hungry wolf, someone once wrote. Two people who knew all about being stigmatized were AIDS activist Ryan White and pop legend Michael Jackson. When their roads of life converged in the late 1980s, they recognized the other’s need for friendship and acceptance. Today, on World AIDS Day, the battle against HIV/AIDS prejudice continues. It’s a fight that’s far from over.
Back to the eighties
The story of Ryan White and Michael Jackson goes back to the 1980s, a decade of contrasts. Synthesized pop songs, ET, and Marty McFly’s time travel in a DeLorean were as much part of life as Russian Glasnost and the fall of the Berlin Wall. Life in the eighties was both magical and mundane, hopeful and realistic.
Contrasts also formed part of the young life of Ryan White. In 1984, at the age of thirteen, Ryan was diagnosed with AIDS. Born with hemophilia, a disorder that prevents the blood from clotting, Ryan was treated with injections of a blood protein that – unknowingly – was infected with the incurable human immunodeficiency virus.
In December 1984, doctors told Ryan that he only had three to six more months to live. Since the causes of HIV/AIDS were largely unknown at that time, gowns, gloves and masks appeared at Ryan’s hospital bed. Suddenly, the bright teen’s future looked very bleak.
Fighting for acceptance
But sometimes life has a way of making treasures out of trash. As young as he was, Ryan was a fighter. Battling his illness, the teen from Kokomo, Indiana was determined to return to school. His school principal, however, didn’t agree. HIV/AIDS carried a severe stigma and was seen by many as a ‘dirty man’s disease’ or even a punishment of God.
If Ryan would so much as breathe in school, sneeze, cough, touch his classmates or use the facilities, he might transmit the disease – or so people believed. As both teachers and parents rallied against Ryan’s return to school, he had no other choice but to attend classes by telephone.
Yet Ryan could not accept the prejudice he encountered. As he later recalled in a speech for the President’s Commission on AIDS in 1988: “It was difficult, at times, to handle; but I tried to ignore the injustice, because I knew the people were wrong. My family and I held no hatred for those people because we realized they were victims of their own ignorance. We had great faith that with patience, understanding, and education, that my family and I could be helpful in changing their minds and attitudes around.”
Going to court
Eventually, Ryan and his mother Jeanne decided to go to court. After nine months of legal battle, which was extensively covered by the media, Ryan was granted the right to return to school. But school wasn’t the same anymore. Classmates refused to sit with Ryan, shunned him or left school to attend classes elsewhere.
At home, life wasn’t much better. Shop keepers and cashiers avoided touching Jeanne White’s hands when giving back change, strangers in the streets called Ryan names, and people distanced themselves. The latter became painfully clear when on Easter Sunday no one in church wanted to shake hands with Ryan.
A better life
As if things weren’t bad enough, a bullet was fired through the living room window of the White family home. It was the final straw after years of harassment. The White family decided to relocate to nearby Cicero, Indiana. Here, life became better. Ryan enrolled in high school, where the principal welcomed him with a handshake and encouraged students to discuss the topic of HIV/AIDS.
Ryan become an active spokesperson for HIV/AIDS awareness. The optimistic teen from Indiana talked to everyone who cared to listen, whether it was a classmate, a journalist or a national television crew. Ryan fought against the stigma of the disease – a stigma closely linked to homophobia and prejudice against intravenous drug users. He advocated the testing of blood supplies and raised the issue of public education about the disease.
It was at this time, in the late eighties, that Michael Jackson reached out to Ryan to offer his friendship and support. Jackson wasn’t the first one to do so. Several celebrities, most notably Elton John, lend their face and voice to Ryan’s battle for a humane and dignified treatment of those suffering from HIV/AIDS.
Jackson particularly identified with the teen’s isolation and struggle for a normal life. He called Ryan several times by telephone before inviting the White family to Neverland Ranch. Here the teen from Indiana and the King of Pop forged a friendship that would last until Ryan’s death in 1990.
“You know, I think people first became friends with Ryan because they kind of felt sorry for him,” Jeanne White said on the CBS Early Show in 2009. “And Michael was always so amazed. I think maybe that was the truth with Michael. But once you met Ryan you didn’t feel sorry for him and Michael said, ‘You know, Ryan never talked about his illness, he never wanted anybody to feel sorry for him.’ So I think they really had this good communication of, you know, respect for each other.”
Keeping in touch
Jackson met the White family as often as he could in Neverland or at one of his concerts. For Ryan, the King of Pop was not at all like what he’d read or heard. “Michael’s not flaky or weird, like you read in those newspapers you can buy in the supermarket”, Ryan wrote in his autobiography Ryan White: My Own Story. “He’s real quiet and soft-spoken. Sometimes he takes a while to say things. He’s just kind of gentle and peaceful. He was a nice new friend for me to have.”
For Jackson, Ryan’s optimism and down-to-earth look on life were equally inspiring. Yet Ryan was still gravely ill and Jackson had trouble coming to terms with that. In a conversation with Shmuley Boteach on this topic, Jackson recalled how one day Ryan and his mom were sitting at the dining room table at Neverland, discussing Ryan’s funeral.
“He said, ‘Mom when I die, don’t put me in a suit and tie. I don’t want to be in a suit and tie. Put me in OshKosh jeans and a T-shirt.’ I said, ‘I have to use the bathroom,’ and I ran to the bathroom and I cried my eyes out. Hearing this little boy telling his mother how to bury him. That hurt me. It was as if he was prepared for it and when he died he was in OshKosh jeans and a T-shirt and a watch that I gave him. How could your heart not go out to someone like that?” Jackson recalled.
Ryan lived to see his eighteenth birthday. In the following months, however, his health quickly deteriorated and with his respiratory condition worsening, he was rushed to Riley Children’s Hospital in Indianapolis. Here, Ryan was put into an induced coma from which he, sadly, would not wake up.
While family friend Elton John stayed at Ryan’s hospital bed, Jackson heard the news in Atlanta City where he was at work. “Michael called and he asked to speak to Ryan,” Jeanne recalled in an interview with the Rural Center for AIDS/STD Prevention in 2010. “And I said, ‘Michael, he won’t be able to hear you, he’s in a coma.’ And Michael said, ‘No, he’ll be able to hear me, I know he will.’ He said, ‘Can you get a telephone line ran to his room?’”
It was the last time the two friends communicated. A few hours later, Ryan passed away. It was April 8, 1990, one month before his high school graduation. As soon as Jackson heard the news, he flew to Indiana to offer his condolences to the family. He spent several hours comforting Jeanne and visiting Ryan’s bedroom. Jackson sat down for a long time, quietly looking at the items Ryan had cherished throughout his life.
Among Ryan’s treasures was a new leather jacket that Jackson had bought for him, as well as a red Mustang convertible – parked in front of the house – which Jackson had given him for his eighteenth birthday. Ryan’s sister Andrea walked Jackson to the car. When he started the engine, ‘Man In The Mirror’ began to play on the car’s CD player. It had been Ryan’s favourite Jackson song and the last one he heard when driving his dream car.
Gone Too Soon
Ryan’s funeral was attended by 1,500 people, including Jackson and other celebrities such as Elton John who performed ‘Skyline Pigeon’. Jackson was seated beside Jeanne and Andrea White, comforting the family throughout the service. Ryan was buried close to home. His black and white marble headstone includes song lyrics by both Elton John and Jackson.
Jackson, however, wanted to do more for his young friend’s legacy. “Three days after Ryan’s funeral, Michael called me and asked me how I was doing”, Jeanne White said in the CBS Early Show in 2009. “And I said, ‘Michael, what made you and Ryan so close?’ He said, ‘You know Jeanne, most people can’t get over the awe of who I am. So nobody ever acts normal around me.’ He said, ‘Ryan knew how I wanted to be treated because that’s how he wanted to be treated.’
And then he said, ‘Jeanne I promised Ryan he could be in my next video. But now that he’s gone, I can’t put him in my video. But could I do a video for him?’ And I was like – that’s unbelievable, I mean that he would do a video. And he did the video called ‘Gone Too Soon’ – that’s a memory that will stay forever.”
‘Gone Too Soon’ was released as a single on World AIDS Day 1993. To further spread the message Ryan had fought so hard for, Jackson also performed the song at President Bill Clinton’s inaugural gala. Before singing, he addressed the audience with a short eulogy for Ryan, expressing his profound wish that the teen’s life would have meaning beyond his passing.
Ryan White’s life certainly had meaning beyond death. In 1990, the United States Congress enacted the Ryan White Comprehensive AIDS Resources Emergency Act – also known as the Ryan White CARE Act. To this day, it is the largest federally funded programme in the US for the care of people with HIV/AIDS. The programme funds treatments when no other financial resources are available.
And Jackson? Until a few years before his own unexpected death, Jackson kept in touch with the White family. One memory Jeanne White cherishes, is when Jackson called her on Mother’s Day. “A couple of years ago he called me and he said – because him and his mom had been talking – and he said, ‘I just thought I’d call you and tell you Happy Mother’s Day. And I… you know, people don’t know those kind of moments from Michael”, Jeanne White told Indiana’s WishTV in 2009.
Besides dedicating ‘Gone Too Soon’ to Ryan, Jackson also wrote a poem for the teen in his book Dancing The Dream. “It just shows that he did not ever plan on forgetting Ryan. And that we plan on never forgetting Michael”, Jeanne White said with a smile.
Jeanne White Ginder – she has remarried – continues her battle against HIV/AIDS prejudice. “After twenty years you still have people that say that with what they knew at the time, they felt like they were doing the right thing. And then you have people say: it became so ugly they didn’t want to have an opinion, because it would create so much controversy. And then you have people that are in complete denial and they say it’s God’s punishment – even today you will have people”, she said in an interview with the Rural Center for AIDS/STD Prevention in 2010.
Although being diagnosed with HIV today no longer means a death sentence, not everyone’s attitude towards those living with the disease has evolved. HIV/AIDS stigma continues to fester long after the 1980s are gone. No wonder that World AIDS Day 2016 has as its theme: ‘HIV stigma: not retro, just wrong’.
Battling the wolf
There still is no cure for HIV/AIDS, so fundraising is an important part of World AIDS Day. Money is needed to support research, to improve public education, and to continue the fight against prejudice. Even as a child, Ryan White knew that the latter might be the hardest battle. For even though the tragic early days of AIDS discrimination have passed, stigma still prevents people from being tested or from asking for medical care.
United Nations Secretary-General, Kofi Annan, described the HIV/AIDS stigma in 2002 as follows: “The impact of stigma can be as detrimental as the virus itself. The solitude and lack of support it imposes are deeply wounding to those who suffer it. It should also hurt every one of us, for it is an affront to our common humanity.”
Ryan White knew the name of the hungry wolf he was fighting: “In my case it was fear. Just because, you know, I suppose you have something in your body that nobody else had or very few people had… I mean, I’m surprised that we have dogs nowadays, because they’re different. It’s amazing how, you know, you can accept a dog into your house but you can’t accept someone because of their race, their colour or their religion, or what they have in them.”
What Ryan White had ‘in him’ didn’t matter to his mom Jeanne, to Jackson or to any of the other friends and celebrities who supported the teen. They cherished what made him stand out: his unwavering optimism, friendliness and courage. That’s how you beat a hungry wolf, no matter how loud and persistent the howling.
© Annemarie Latour