February 16, 2017
HIV bill in CA could decrease stigma and discrimination
It is widely unknown amongst the general population in the U.S. that we currently have antiquated and discriminatory laws that criminalize people living with HIV.
Two thirds of U.S. states, territories, and possessions have HIV-specific criminal statutes used to prosecute people with HIV. Most Americans would be shocked to learn that the only country that has prosecuted more people based on HIV status than the U.S. is Russia.
Repealing these laws would have been a priority for my grandmother, and I feel it is more important than ever to shine a light on these issues, especially given the new political climate we’ve entered. Legislation criminalizing HIV began in the early 1980s when contracting the disease was thought of as “a death sentence.” Three decades later, this is no longer the case. Current HIV medication, when taken regularly, reduces viral load (the amount of HIV in your blood) making it almost impossible to transmit the virus.
We also now have medications that can prevent HIV transmission — a daily pill called PrEP that some people have compared to the birth control pill, but for HIV prevention. Yet, the laws have not caught up with medical advances.
Most of the laws are about disclosure and make it illegal for a person with HIV to engage in sexual contact without first disclosing their status. It doesn’t matter if the person has an undetectable viral load and/ or uses a condom and no HIV transmission occurred. In some places spitting or exposure to saliva can be prosecuted as a felony, even though we’ve long known that HIV can’t be transmitted through saliva.
My advocacy work with The Elizabeth Taylor AIDS Foundation and our grantee partner, SERO Project (a network of people with HIV and allies fighting for freedom from stigma and injustice), has introduced me to some heartbreaking stories of people whose lives are ruined by these unjust laws: Kerry Thomas, a grandfather in Idaho, is serving 30 years in prison for consensual sex where both parties agreed that he always insisted on using condoms.
His medical records show he had an undetectable viral load and the virus was not passed, yet Kerry was convicted anyway. And Willie Campbell, who is serving 35 years in a prison in Texas for spitting, after the court classified the homeless man’s saliva as a “deadly weapon”.
These cases are not just happening in ‘red states.’ The state of California has arrested and charged more than 800 people under HIV criminalization statutes between 1988 and 2014.
This is a human rights issue. Lack of education and misinformation are being used as weapons of blatant discrimination. In fact, most of the laws are very vague, leaving too much to interpretation and potential discrimination.
According to the CDC, as of 2015, 92 percent of new infections occur from people who do not know their status or are not on treatment. If laws criminalizing HIV and stigma were gone, people would feel more at ease to disclose their status, whether at work, or in an intimate or sexual relationship, ultimately resulting in more people getting tested, knowing their status and directly reducing the spread of new HIV infections.
Laws that criminalize HIV increase stigma and discrimination. They hinge on the disclosure requirement, which frequently comes down to “he said-she said”, with the HIV-positive person more often than not perceived as a villain, and facing an assumption of guilt when in a courtroom.
Using updated scientific facts to educate the public can work. In Colorado, the state legislature recently voted to pass Senate Bill 146, repealing two HIV criminalization statutes and reforming others. “Most people really knew very little about this topic. Yet when presented with evidence, they quickly agreed these laws are anachronistic and are no longer based on current science and medicine,” Colorado Senator Pat Steadman said of the success local advocates had in changing the outdated legislature.
Now in California there is an opportunity to pass legislation that is inclusive, updated, and reflective of the advances we make in society.
Last week, California Senator Scott Weiner and Assembly members Todd Gloria and David Chiu introduced Senate Bill 239, a bill that will modernize laws that criminalize and stigmatize people living with HIV.
Passage of reforms like Senate Bill 239 are necessary next steps in the fight against HIV in the U.S. and around the world. We know that marginalized communities face huge disparities with HIV and AIDS rates, and specific HIV criminalization laws only exacerbate this fact.
Most people faced with HIV criminalization charges in California include people of color, cis and transgender women, and LGBTQ youth.
Thankfully we also have organizations like Equality California, the ACLU, Positive Women’s Network, and others who support medically and scientifically accurate information pertaining to HIV, and continue to work with members of the Californians for HIV Criminalization Reform (CHCR) coalition to ensure justice and empathy for people living with HIV. One thing we should all know: HIV is not a crime.
My grandmother’s work as an activist and advocate is inspiring. She had such visibility and used it so brilliantly to help raise awareness and ease the suffering of those with HIV. And while we don’t all have that same kind of visibility, if we all work to speak out about intolerance, and we do what we can to raise awareness, then we become a movement, and that’s what becomes a force for change.
Naomi Wilding is granddaughter of the legendary actress and humanitarian, Elizabeth Taylor. She is now an ambassador of The Elizabeth Taylor AIDS Foundation and has pledged to do what she can to help those living with HIV and AIDS, and in creating an AIDS-free generation.
LAELA WILDING & NAOMI WILDING, DECEMBER 1ST 2016
Laela and Naomi Wilding are sisters and granddaughters of the legendary actress and humanitarian Elizabeth Taylor. They are now ambassadors of The Elizabeth Taylor AIDS Foundation and have pledged to do what they can to help those living with HIV and AIDS, and create an AIDS-free generation. To mark World AIDS Day on December 1, they've shared with Refinery29 the following piece on how we can help fight the stigma — and spread — of HIV and AIDS.
It might shock you to learn that at least 63 countries still have laws on the books that treat HIV as a crime, even in 2016. Perhaps what's even more shocking is that the only country that has prosecuted more people than the U.S. is Russia.
Much of the general population in the United States doesn't realize that we still have antiquated and discriminatory laws on the books that criminalize people living with HIV. Repealing these laws would have been a priority for our grandmother, Elizabeth Taylor, and we feel it is more important than ever to shine a light on these issues, especially given the new political climate we’re entering.
Many of these laws began in the early 1980s, when contracting HIV was thought of as “a death sentence.” Three decades later, this is no longer the case. Current HIV medication, when taken regularly, reduces viral load (the amount of HIV in your blood), making it almost impossible to transmit the virus. We also now have medications that can prevent HIV transmission — a daily pill called PrEP that some people have compared to the birth control pill, but for HIV prevention. Yet, the laws have not caught up with medical advances.
Most of the laws are about disclosure. They make it illegal for a person with HIV to knowingly expose anyone to the virus without disclosing their status. It doesn’t matter if the person has an undetectable viral load and/or uses a condom and no HIV transmission occurred, or even if risk of transmission existed. In some places, spitting or exposure to saliva can be prosecuted as a felony, even though we’ve long known that HIV can’t be transmitted through saliva.
These laws increase stigma and discrimination against people living with HIV. They hinge on the disclosure requirement, which frequently comes down to “he said-she said,” with the HIV-positive person more often than not perceived as a villain, facing an assumption of guilt when in a courtroom.
To address this, The Elizabeth Taylor AIDS Foundation is working with SERO Project, a network of people with HIV and allies fighting for freedom from stigma and injustice. The partnership has introduced us to some heartbreaking stories of people whose lives are ruined by these unjust laws. Kerry Thomas, an Idaho grandfather, is serving 30 years in prison for consensual sex where both parties agreed that he always insisted on using condoms. His medical records show he had an undetectable viral load and the virus was not passed to his partner, yet Kerry was convicted, anyway. And in Texas, Willie Campbell is serving 35 years in a prison for spitting, after the court classified the homeless man’s saliva as a “deadly weapon.”
This is a human rights issue. Lack of education and misinformation are being used as weapons of blatant discrimination. In fact, most of the laws are very vague, leaving too much to interpretation and potential discrimination. The phrase “take the test and risk arrest,” means that if you know your HIV status, you could run the risk of potential incarceration, creating a direct deterrent to HIV testing.
According to the CDC, as of 2015, 92% of new infections occur from people who do not know their status or are not on treatment. If laws criminalizing HIV and stigma were gone, people might feel more at ease to disclose their status, whether at work or in an intimate or sexual relationship. As a result, more people would get tested and know their status, a change that could reduce the spread of new HIV infections.
Using updated scientific facts to educate the public can work. In Colorado, the state legislature recently voted to pass Senate Bill 146, repealing two HIV criminalization statutes and reforming others. “Most people really knew very little about this topic. Yet when presented with evidence, they quickly agreed these laws are anachronistic and are no longer based on current science and medicine,” Colorado Sen. Pat Steadman said of the success local advocates had in changing the outdated policy. Increased knowledge about reduced infectiousness of HIV has led to a number of jurisdictions revising or revisiting their criminal laws or prosecutorial policies.
Colorado is just the beginning. Even with its changes, there are still 32 states across the nation with HIV-related laws. A few weeks back, one of us visited with activists in Idaho who are working so hard to get their voices heard, but it can feel like an uphill battle without support.
Despite progress in understanding HIV, people living with the virus still regularly encounter stigma, stereotyping, and discrimination. On the federal level, one solution is The REPEAL HIV Discrimination Act, legislation that would help fight discrimination in civil and criminal law against people living with HIV. Rep. Barbara Lee reintroduced a new iteration of the REPEAL HIV Discrimination Act in March of last year.
The aim of the proposal, H.R.1586, is “to modernize laws, and eliminate discrimination, with respect to people living with HIV/AIDS, and for other purposes.”
Our grandmother’s work as an activist and advocate is inspiring. She had such visibility and used it so brilliantly to help raise awareness and ease the suffering of those with HIV. And while we don’t all have that same kind of visibility, if we all work to speak out about intolerance and do what we can to raise awareness, we become a movement. And that movement will become a force for change.
Our grandmother’s heart would break to witness the continued stigma and lack of education around this issue. We want all activists working toward this goal to know that they are not alone in this important effort.
We stand with them and know that many who read this will feel the same way, but won’t know how to help. Start by asking your representatives in Congress to co-sponsor the REPEAL HIV Discrimination Act of 2015 (H.R.1586 and S. 2336). A phone call to your representative will just take a few minutes of your time — but it can go a long way.
Issue Magazine, 2016
Catherine Opie’s work ranges from self-portraiture to landscape photography, often investigating identity through portraits of social groups including the LGBT community, surfers and high school football players. Her work documents and gives voice to social phenomena in America today, registering her subjects’ attitudes and relationships to themselves and others, and the ways in which they occupy the landscape. At the core of her investigations are perplexing questions about relationships to community, which she explores on multiple levels across all her bodies of work.
For years, Opie has been an active member of ACT UP and Queer Nation. She is an Ambassador for The Elizabeth Taylor AIDS Foundation and continues to donate her work to fundraise for HIV and AIDS-related causes.
Naomi deLuce Wilding: Where are you from?
Catherine Opie: I grew up in Sandusky, Ohio until I was thirteen, and then we moved to Poway, California, which is north county San Diego. Ohio was lovely—right on Lake Erie. I liked it.
NW: Do you miss it?
CO: Well, I went back recently and did a whole body of work for the Cleveland Clinic in Ohio. I made the four seasons of Lake Erie. I got to spend about a year and half going back and forth to Ohio, staring at the lake during different seasons and photographing it. I came home at one point and said [to my partner], “Hey, Julie! You know how you want to have a horse ranch, more garden space and everything? We can do that in Ohio. I can try to teach at Oberlin.” She was like, “Yeah, we’re not moving to Ohio.” [laughs]
NW: I think that having access to those places is important, whether it’s nostalgic or because it resonates with you, but it’s not always enough. I felt that way going home to Wales recently. I loved being home and away from the grit of the city, but I’m connected to LA for many reasons—community, diversity, the energy of what’s happening here.
CO: It’s a fascinating city, Los Angeles. When I studied undergraduate at the Art Institute in the Bay Area, everybody assumed that I would stay. I came out as a lesbian and was part of a leather community. I had very deep roots in the community during the five years I lived there. So when I finished grad school at CalArts everybody was like, “You’re coming home now, right?” And I said, “No, I’m pretty interested in LA. I actually want to talk about this place.”
NW: That was my next question: When and why did you arrive in Los Angeles?
CO: 1985. At CalArts, I spent a good amount of my work looking at ideas of master plan communities and making a very large thesis on white flight from urban areas. What is a master plan community? How is it designed? Who is it designed for? I delved into the suburbia of the eighties, which was really different than the suburbia of the fifties in terms of American ideology and dreams. It was really in relationship to a city becoming a threatening place. So I spent two years digging into that idea and then moved to LA, to MacArthur Park just at the time that the subway was being built. I did a whole body of work of what it means to gentrify the MacArthur Park area, looking at it in relationship to transportation. And so I kept kind of peeling away at Los Angeles for all these years in my work in these different ways.
NW: How could you leave? It’s so embedded in your journey as an artist.
CO: Very much so.
NW: Do you consider your work as a photographer to be a form of activism? Put simply, do you think you are able to educate or improve people’s lives?
CO: It’s curious. I move in and out of it in different ways. There are some times in which I have incredible optimism in humanist acts and what democracy really is as somebody who, through multiple bodies of work, has traversed these conversations of ideas of community and democracy. Within the early portraits I did of my friends, I don’t think that I was attaching any optimism about changing the perception of homosexuality. So activism is tricky—it might not be about the full ability to change people’s perceptions, but making images creates a record. And without a record, or without trying to delve into issues of identity and visibility and providing images, a whole subset of culture would be completely denied.
NW: Right.
CO: And so, by going in and doing difficult things, I guess that one could think of me as a bit of an activist at the time. I was definitely an activist with ACT UP and Fair Nation, but that was really out of a sense of loss—very different than activism. In my work, it was about hanging on to this moment in our lives in which all of us were incredibly vulnerable from the decimation of our community through AIDS and experiencing extreme hatred. So when I made it, it was really for my own community and, selfishly, for myself to hang onto people that I was losing.
NW: Even if you weren’t optimistic about your own work being a catalyst for change, did you have any confidence that things were improving and perhaps this would document the process?
CO: I actually wasn’t confident that we would have equality in my lifetime.
NW: Wow. But it’s always two steps forward and one step back. I think for things to change permanently, there has to be a process. There has to be something tangible, and maybe that’s what photography does—enable us to look back and see the steps along the way.
CO: Well, it’s so fascinating. But I’m interested in ideas of memory. You know, recently I watched the Nina Simone documentary, which is just brilliant. I hadn’t known just how tied she was to the Civil Rights Movement and how her voice was kind of left out in recent histories.
NW: Do you think that’s because she was a woman?
CO: I think so.
NW: Sorry, that’s another story.
CO: With what’s been happening in terms of Black Lives Matter in the United States, this incredible police presence that we live under and the inequality that’s happening within the African American community—you look back at those Civil Rights images and realize that things haven’t changed enough.
NW: I think those of us who are affluent, white and living in our liberal bubbles can be easily fooled into thinking we’ve politically evolved. But then you travel outside or listen to the news. You realize that it’s a much slower process, and we need to work much harder.
CO: It’s a very slow process. Looking at those photographs triggers my own childhood memory of watching the nightly news and the Chicago riots and kind of going through that period of time. I was born in ’61. The TV and the nightly news were prevalent in American culture. When I go back and look at images of Vietnam and the Civil Rights Movement, I remember how far we’ve come. Yet we haven’t really even scratched the surface. I think that without people going out and making the work, the potential to remember an idea as it was is no longer there.
I did a body of work in and around West Adams with polaroids of the nightly news. Recently, with the anniversary of Katrina, the image that kept being shown on the news was the kids on the roof holding up “Help Us.” That was one of the polaroids I made, so it’s interesting what gets recycled in that way.
NW: It’s almost like you’re an archivist or documentarian.
CO: I’m a huge [Dave] Eggers fan. I had my students read Eggers last quarter when I was teaching my undergrad class, “Selfie/Self Portraiture/#WTF.” They had to read his book The Circle about social media. It’s interesting how social media is used in relationship to activism now. So much of what we can talk about and understand about police brutality is because somebody was there with a cellphone. Has that literally replaced the common conception of journalism? Have we become a society in which self-imposed documentarians are taking on the world?
NW: Yes! Tell me about what you did with ACT UP.
CO: Protests. Hit the streets. New York and LA. I started by going to meetings in New York and then continued to be a part of ACT UP, but primarily Queer Nation in LA until it all folded. I did some needle exchange work.
NW: Are there any organizations you’re still involved with?
CO: Not really. Mainly my philanthropy is giving to AIDS organizations. In terms of an activist role, no.
NW: Would you like to be more involved on that level again?
CO: If I had the time. But you know, that was when I was alone. It’s harder when you’re a full-time professor, parent, on boards and a full-time artist. It’s harder to kind of just get up and go to meetings like you did. But I don’t think that there’s the same kind of activism in the country today.
NW: I think that my generation and younger lacks a sense that we can make an impact and are very apathetic. It’s dangerous. Do you try to inspire your students to have that same sense of energy to elicit change in whatever way they can?
CO: Absolutely.
NW: You are still actively involved then, as a teacher.
CO: I totally get involved. Read the news. Watch it. Understand what’s happening in the world. So many people don’t even read the paper.
NW: A photograph that you took as part of the 700 Nimes Road series at Elizabeth Taylor’s home raised $275,000 at The Elton John AIDS Foundation benefit recently. Was it a revelation to you when you first realized you could raise huge amounts of money for worthwhile causes by donating your work?
CO: Not really because I know the value of the work and that people desire it. What’s harder for me is that now everybody’s using art for philanthropy, and we can only donate so much because we also need to make a living. I think everybody coming to you for art all the time is really difficult. It makes you feel really bad having to say no.
ISSUE MAGAZINE, 2015
Musician Moby frequently performs his powerful and emotionally evocative music to help raise money at charity fundraisers for organizations such as The Art of Elysium and The David Lynch Foundation. He is a vocal supporter of numerous philanthropic causes, and an outspoken vegan and animal rights activist. He meditates and practices mindfulness, but isn’t a follower of any dogmatic religious tradition. Naomi deLuce Wilding asks him about his relationship to philanthropy, and in turn he talks to us about the evolution of the human mind and its capacity to evolve towards greater kindness.
Naomi deLuce Wilding: You seem to be a person with a sense of responsibility towards helping others in one way or another. I’d like to ask you how you feel about the concept of community responsibility, philanthropy or advocacy, especially as a person in the spotlight able to influence others through your actions.
Moby: Yeah, I mean it’s an interesting question when it comes to almost anything. In almost every aspect of our life, we usually focus on the “what”—meaning what people are focused on as opposed to what the true motivation is. And when I look at something like philanthropy, there are so many reasons that people pursue philanthropy or altruism… I’ve never really thought of it that way—to question why is it important to me?
On one hand, it seems sort of self-evident. It’s making things better, insofar as you can, so it seems like it should be important to everyone. But then I think some people pursue philanthropy (I’m not maligning anyone) for public acclaim. Like when someone builds a hospital and put their name on it. God bless, you have a hospital with a narcissist’s name on it, but you have a hospital.
NW: Agreed. I grapple with the idea of philanthropy being the hobby of the wealthy few who support the sick poor by writing a check. There’s no denying that we need those checks, but the people writing the checks aren’t being changed in any way. One thing I loved about talking to Jennifer Howell [of The Art of Elysium] was that she recognised how “charity impacts the world by impacting the artists who are the hands to make the mission happen.”
M: There are those people who are philanthropic out of habit, and then there are quite a lot of people—and I’m sure I’m guilty of this as well—who are philanthropic out of a sort of distorted sense of self-worth, you know? Because the world is a vast place—seven billion people and it’s five billion years old. Not much of what I do is going to have a huge, comprehensive, lasting impact. Or if it does, I’m certainly not going to be aware of it.
But then I think a lot of people involved in philanthropy, social activism or causes have inflated egos—a sense that the work is probably more important than it really is. If people understood the true lasting consequences and significance of their work, they’d just fall into some sort of existential despair.
NW: I beg to differ. Without needing an inflated ego and without even being a philanthropist, activist or any kind of -ist, we can help each other. Providing art or music to heal and enrich our lives is one of the greatest ways to help those in need—and being of service within our own communities. I believe there is a domino effect in that which can make a difference on a global scale, but it is never about what that one, first person was able to do.
M: So many of us still have this pre-Renaissance idea that the world does spin around us. And there’s something liberating about accepting that the nature of the universe, the meaning, the significance of things might actually be beyond our understanding. All we can do is—I mean, this is hopefully what informs a lot of my philanthropy—do the best with what we have but without too much hubris or self-importance. So when I do philanthropic things, I’m trying to make things better. I’m not convinced that I am making things better, and I don’t know what the lasting significance of my actions might be—it might be nothing. Who knows, a hundred years from now some historian might look back at me and say, “He was the worst person in humanity because he did this. He tried to save animals not knowing that cows were gonna take on sentience, take over the world and become genocidal dictators.” The world is a complicated place. Who would have known tens of millions of years ago when our ancestors were tiny little scared mice living in cracks? Imagine a tyrannosaurus rex looking at a scared little mouse and saying, “At some point there will be seven billion of them on this planet, and they will own the world and destroy it.”
NW: It should have eaten the mouse!
M: So that’s the “why” of philanthropy, simply looking at it from my subjective human perspective. Looking at things that could be improved upon and also having an understanding, as a human, of what other humans are doing. When another human does something egregious and stupid, we kind of understand it because we’re related to them. We’re like, “Oh, you know what? I probably would have done the same thing.” And so when we see someone smoking cigarettes, eating Big Macs, hitting their kids and driving a Hummer, we look at them and we’re like, “On one hand, that’s really not we should all be doing, but I understand why you’re doing it because I’m human.” So a part of philanthropy is almost like being a chiropractor—you’re trying to adjust things to get back to where they make more sense.