Hansen: Ignorance and HIV
Editor’s note: This is the second in a two-part series about HIV and AIDS. Last week featured a look into the life of Scott Alan, a Laguna Beach AIDS and cancer survivor. This column focuses on local HIV support and education programs.
Don’t hug him. Don’t shake hands. And whatever you do, don’t kiss.
When HIV and AIDS started escalating out of control in the 1980s and 1990s, few people knew how to deal with it. Rumors were rampant. People were afraid, angry and helpless.
Family members fought against each other. There were drama-filled holidays, misinformed stories and hateful urban legends.
Should we sterilize the silverware or just throw it out?
What towel did he use in the bathroom?
I think he coughed on me.
It was a nightmare.
People with HIV were treated like outcasts — or worse.
Everyone seemingly has a story from that time.
I have a family member with HIV. The first time after the “news” in the late 1990s, the upcoming Christmas party was a huge ordeal. The whole family was in a tizzy about how to handle the new reality.
Finally, it came down to my 80-something grandfather to set the example by greeting my HIV family member at the door — in front of everyone — with a big hug and a purposeful kiss on the lips.
There were a few gasps but otherwise, everyone shut up after that.
Today, reactions are still less than ideal.
“Many of my neighbors still live in fear,” said Brian Sadler, a member of the Laguna Beach HIV Advisory Committee.
Sadler lives in Hagan Place, the 24-unit, federally subsidized housing complex on Third Street that only shelters people with HIV.
He said those with HIV often struggle with public acceptance. The son of a Kansas preacher, Sadler knows about disapproval, family struggles and beliefs about right and wrong.
“The whole town became toxic toward me,” he said. “I felt like the leper. Now, I’m only as sick as my secrets, so I wear my HIV on my sleeve.”
The way Sadler coped when he arrived in Laguna in the late 1990s was by starting activities in Hagan Place, first by cooking meals in the community kitchen, then organizing movie and game nights.
“You need a relief valve,” he said.
Over the years, the activities helped but people with HIV tend to stay under the radar.
When Sadler joined the city’s HIV committee about 10 years ago, he enjoyed shifting his attention to education.
The committee has several outreach programs geared toward young people, including the high school and local Boys and Girls Club.
“Fear is not an effective education tool,” he said, describing the approach with teenagers. “Make it more about personal self-esteem, so you love yourself enough that you use a condom.”
The committee has rotated several activities over the years, such as barbecues, pot lucks or the more well-known support for World AIDS Day. The goal is to show there is “no shame in being HIV,” he said, and that “we are just regular folks.”
They leave brochures in discreet places like bathrooms to make it easier for someone to take one without public exposure.
Every year, the committee brainstorms on fresh ideas to raise awareness.
Sadler said one idea he’d like to see happen is having “condom flash mobs on Main Beach” where random people are given condoms.
A couple years ago, he said some high school students wore sandwich boards downtown with questions like: “Can you get HIV by kissing someone on the mouth?”
People would have to ask for the answer, which fostered dialogue.
Sadler said he is still surprised by the number of “absolutely clueless kids.”
“I am really quite surprised,” he said.
This type of HIV ignorance is borne out by the statistics.
Today, the number of HIV infections is rising nationwide. According to the Centers for Disease Control, every month, 1,000 young Americans become infected with HIV. In Laguna Beach, it is estimated there are about 450 to 500 people who are HIV-positive, Sadler said.
Michelle Sherman, a local HIV pharmacist with a long history of helping in the community, agrees that education is still vital.
“HIV infections continue to rise among youth and seniors and there seems to be a complacency among the general population that somehow the epidemic is over, which is far from the truth with around 50,000 new infections in U.S. each year,” she said. “Young people think they are invincible and don’t use condoms, then are surprised when they get infected. Seniors don’t think of using condoms because pregnancy is not a risk and STDs are not something they think of.”
Sherman said for those who are infected with HIV, the medication is getting better but it is still not perfect. Plus, it is important to get the right support team.
“An HIV diagnosis is still devastating to the person and they need to be directed into medical care and social services to ensure that they are ready to go on antiretroviral treatment as soon as possible regardless of their viral load and T-cell count,” she said. “The newer antiretrovirals are much simpler than the older ones, but they are still not without side effects and toxicities.”
This type of detailed advice is critical for those who are infected, but for prevention, the education can be more subtle. Sometimes, especially with young people, it’s more about breaking stereotypes, Sadler said.
Some of his most meaningful experiences have come from the kids at the Boys and Girls Club. These are the 12- to 14-year-olds who are often more blunt and genuine.
“Their questions were very poignant,” he said. “Like, ‘What did it feel like when you found out?’”
For Sadler, like all, it was painful. It was something he still remembers as if it were yesterday.
And for 1,000 new young people a month, it is yesterday.
For anonymous HIV testing that takes 20 minutes, go to the Laguna Beach Community Clinic, 362 Third St. No appointment is necessary, (949) 494-0761. Other resources are available at the AIDS Services Foundation, (949) 809-5700, Shanti Orange County, (949) 452-0888 or Sherman’s education website: https://www.HIVThrive.com.
DAVID HANSEN is a writer and Laguna Beach resident. He can be reached at davidhansen@yahoo.com.