Creating a different law for people based on an immutable characteristic has created a viral underclass in the law. Every person with HIV now is one disgruntled ex-partner away from finding themselves in a courtroom, argues activist Sean Strub.
This December first there were events in thousands of communities to mark World AIDS day. Where I was, a film screening was followed by a panel discussion. The first celebrated the accomplishments of ACT UP, an activist explosion that changed America; the second drove home just how much is still left to do.
Jim Hubbard's United In Anger: A History of ACT UP takes us back to the early 1980s, when 40,000 Americans died while the president refused to utter the word AIDS. A Los Angeles Times survey at the time revealed that 50 percent of Americans favored quarantining AIDS victims, 48 percent wanted them to carry special IDs; 15 percent wanted AIDS victims tattooed.
Thirty years and a successful rebellion later, we know the Reagan administration didn't end up putting people with HIV in concentration camps (although, as the film shows, that was a legitimate fear), but more than half the states have laws on the books that criminalize activities of people with HIV. Spitting, biting, failing to disclose HIV status to a partner - state laws currently make those behaviors punishable by 10 to 30 years in jail, even when there is no transmission of disease. Indeed, the Centers for Disease Control long ago concluded that intentional transmission is very rare.
"Every person with HIV now is one disgruntled ex-partner away from finding themselves in a courtroom," says Sean Strub, director of the SERO Project, which works to end HIV criminalization. Speaking on the panel this weekend, Strub emphasized: If you think we've eradicated discrimination, think again. "Discrimination is happening every day."
Criminalizing people with HIV doesn't stop the disease from spreading; to the contrary, says Strub, it makes it more likely, discouraging people from getting tested and driving up stigma and fear.
"Creating a different law for people based on an immutable characteristic has created a viral underclass in the law," Strub tells me in this interview. Last year, Bay Area Congresswoman Barbara Lee introduced legislation, the "Repeal Existing Policies that Encourage and Allow Legal HIV Discrimination ACT. She held a Capitol Hill hearing on the topic this week. Will the 113th Congress act on Lee's anti-discrimination Act? If ACT UP's taught us anything, it's taught us that change requires an outpouring of outrage, and a movement."
Strub, who says he has been living with HIV for more than 30 years, "my entire adult life, talked with me earlier this fall in New York.
Laura Flanders: A year or so ago you made a short documentary called HIV Is Not a Crime. Why that title?
Sean Strub: The title is a direct challenge to the increasing criminalization of people with HIV, which is happening all over the world. The United States is one of the leaders in the phenomenon. Somewhere in the mid-90s, when combination therapy came out, the popular perception of people with HIV began to change.... I think a lot of people with HIV almost feel there is a resentment that we've survived, and increasingly [we're seen] through the prism of our potential to infect others. Seeing us - defining us - as viral vectors, potential infectors. The most extreme manifestation of that is the criminalization of HIV.
LF: Stop right there and tell people what you mean, because I think you're right. A lot of people think that communities have been educated about HIV and we live in a kinder, gentler world than 20 years ago.
SS: Those people are deluded [laughs]. When you say "the criminalization of HIV" you're talking about two categories. First is making it a criminal offense for a person with HIV to have intimate contact with someone else without disclosing they have HIV prior to that intimate contact.
LF: You're saying there are laws on the books?
SS: There are laws on the books that require that disclosure. The other part of criminalization is when someone is charged with some other crime, like an assault charge or a sex crime charge or immigration violation. Because they have HIV, the charges they face are more severe; the penalties they face are more extreme.
Willy Campbell is a guy in Texas who was arrested for spitting at a cop. Spitting at a cop is not very attractive behavior, but he was charged with a very serious felony and sentenced to 35 years in prison because he had HIV. Spit does not transmit HIV. There is no risk of transmission of HIV to the cop, but because Campbell has HIV he got a much more serious sentence. So criminalization is the increasing of penalties and charges for people who have HIV when they are charged with committing some other sort of crime. And then there are also laws specifically that mandate people with HIV disclose that before they have sex with someone - independent of whether there is any risk of transmission or whether in fact there is any transmission.
LF: And how many people right now have been brought up on charges under these regulations?
SS: No one knows for sure. The SERO Project, the group I'm involved with, earlier this year began a project to try and document the extent of the criminalization phenomenon. We filed more than 3000 Freedom of Information Act requests with local prosecutors all over the country to find how frequently they filed charges under the HIV-specific statutes. Not even including the enhanced charges that aren't under HIV-specific statutes, but just under the HIV specific statutes, so far we've documented more than 1000 instances when charges have been filed. (It's not 1000 different people. Some have been charged with multiple counts.)
LF: Tell us some more stories. What kind of consequences are people facing?
SS: Many people's perception of this issue is shaped by media coverage of a few very high-profile cases, and media coverage that is often inaccurate and usually hysterical, and very often driven by racism and homophobia. Nick Rhodes, in Iowa, met a guy online, went over to the guy's house, they ended up having sex. Nick used a condom and he had an undetectable viral load and the guy he had sex with later found out at "the bar" (anyone from a small town knows what that means); he found out at that bar that Nick was positive; he got angry and filed charges. He didn't seroconvert. It's very rare, (probably in less than 5 percent of these criminalization cases, is there actual HIV transmission), but Nick was charged under the Iowa statute and was sentenced to 25 years in prison. He used a condom; he had an undetectable viral load; there was no chance of transmission. Fortunately, advocates were able to get the judge to reconsider that sentence, so that after a year he was let out, but he faces lifetime sex offender registration requirements.
SS: He is subject to wearing an ankle bracelet. He cannot leave his home county without permission from his parole officer. He can't use any social networking sites (even Facebook). He can't have alcohol in his home. He has to agree to have his computer and his home searched at any time without a warrant. He has to take a lie detector test administered by the state several times a year, detail every sexual contact he had, when he met the person, what they did, how often they did it. He can't have sex except in the context of a healthy relationship defined by the state. The lie detector test also ask him questions about whether he is having sex with children or wearing women's clothing or is a voyeur or is interested in having sex with animals. A few months ago, one of the state-mandated therapists he had to meet with suggested phallometric testing, which involves putting a device on his penis and measuring what attracts him.
LF: At the root of all of this hysteria (as you describe it), you have health officials and legislatures - to put the best possible interpretation on it, they may be misinformed, but many believe they're doing something to address a public health risk. Right? Is there a risk? And what do you say to those who think they are trying to keep people safe?
SS: Most of these statutes were passed with a good intention - [namely] to slow the spread of HIV. There is a load of evidence showing that they [statutes] do not do that. There is a growing body of evidence showing that they do the reverse because they drive stigma. What is a more extreme manifestation of stigma than when it's enshrined in a law? Creating a different law for people based on an immutable characteristic has created a viral underclass in the law.
We know that stigma is a huge obstacle preventing people from getting tested. Most HIV transmissions come from people who don't know they have it. Once someone gets tested and know they have it, their sexual behaviors become much less risky than those who have HIV and don't know it. But you can't be prosecuted if you haven't gotten tested. So it's become: "Take the test and risk arrest." Ignorance is the best defense in this circumstance.
[Criminalization] is counterproductive to getting people tested. It's also counterproductive to getting people to disclose. Most people when they test positive, they don't immediately start disclosing. They have to adjust to that information, tell their families, their loved ones, create the support in order to create the environment where it's safe enough for them to disclose. When they get to the point when they are ready to disclose, now they can't because they are worried about someone from their past that maybe they didn't disclose to, and maybe they were perfectly safe, but they didn't disclose, but now they are subject to that person coming and filing charges. We know a lot of these cases are revenge cases. We know a lot of these cases are genuine miscommunication between two people. We did a survey at POZ of readers with HIV if they had ever had a circumstance in their life where they believed they disclosed beforehand and afterwards discovered that their sex partner didn't understand that they had disclosed. Twenty-eight percent had that happen to them. So sometimes people use colloquialisms and vernacular that talks past someone else. Every person with HIV now is one disgruntled ex-partner away from finding themselves in a courtroom.
LF: This year, the international community's biggest AIDS conference was held in Washington, DC. Is criminalization on the table, and do you think we'll see change?
SS: Yes, and yes. It is on the table because a handful of activists have been pushing it hard, led by three of the people in HIV is Not a Crime: Monique Moree, Nick Rhoades and Robert Suttle. When a year or two ago we finally got people to talk about this issue, and criminalization started to get discussed, I was frustrated because we never heard from people who had actually been criminalized. People were always talking about the issue in the abstract. I had gotten a few people I knew who had been prosecuted, and I put them in touch with each other; none had met anyone else that had gone through this. It's a horrible experience; they are sometimes called "AIDS monsters" or "AIDS predators" and they are all over their local news; even their families and their closest friends - it's so complicated and very tough for them to find support. Three of these individuals - Monique Moree, Nick Rhoades and Robert Suttle -agreed to be interviewed and all three of them have also become advocates now, so they speak and are quite expert on this. We've been doing community forums; we go to conferences, events. That has had a very powerful [effect.] It's just one more example of when you actually let people tell their own stories and you listen to the people most directly affected, instead of talking about it theoretically, there's a huge difference.
LF: You've been dealing with this issue, as you said, your entire adult life. Did you think it would take this long? How do you make sense of how long you've been working on this?
SS: I think that there are some people who, for whatever reason, are driven to do social justice work. I was very engaged politically before the epidemic. It was a part of my childhood and my life. To really effectively deal with HIV, you can't deal with it in isolation. It's too intertwined with the issues of poverty, racism, class and sexism and homophobia, all the things that we deal with. Looking at those things in individual silos is sometimes necessary for some short-term gains, but in the long term we need to see the broad continuum of issues and how they interrelate.
I don't think we'll see a cure for AIDS until we find a cure for disease because the things that cause disease are the things that cause AIDS. On the other hand, I did not think I would be here today in 2012. There was a time when I was very sick, weighed 30 pounds less than I weigh now and was covered in Kaposi's sarcoma lesions. I'm certainly grateful that I've been privileged enough to have had access to quality medical care, but I also didn't think that 30 years down the road we would still be dealing with the depth of the bigotry and willful ignorance, that we're dealing. This is not the kind of ignorance that people don't know - it's the kind of ignorance people cling to, refusing to acknowledge the facts no matter how clearly they are presented. I think that the economic and political climate has made it much worse. We are in an era where people are leading harder lives; they are pressed and they are frightened - and they are looking for others to blame. People with HIV are pretty high on that list.
LF: Sean Strub thanks so much.
SS: Thank you.