Open Letter to the Entertainment Industry from the HIV/AIDS Community

February 11, 2016

Dear Entertainment Industry Leaders:

The undersigned organizations committed to addressing the HIV/AIDS epidemic are writing to call upon you, as entertainment industry leaders, to continue to defend and support the rights and dignity of entertainment industry workers living with HIV and to help promote greater public education on HIV. Read the full letter here.

 

Separating Science from Stigma Following the Charlie Sheen Disclosure

Charlie Sheen’s public disclosure of his HIV status, while producing some of the predictable backlash and stigmatizing comments we have come to expect, has also presented a fantastic opportunity to educate the general public about the current science concerning HIV, including treatments, treatment as prevention and the reality of transmission risks, as well as HIV criminalization.

Let’s face it–when it comes to HIV, an awful lot of people are stuck in the ’80s and ’90s. Just take a look at the tabloids or the comments sections on mainstream media articles about HIV. Many people still consider an HIV diagnosis a death sentence (and use HIV/AIDS interchangeably); they grossly exaggerate the actual risks of transmission; they have little to no understanding of the efficacy of current medications; they do not realize that adherence to medication makes transmission next to impossible–even without condoms.

And that’s dangerous. It perpetuates stigma around HIV, which, aside from being damaging to people living with HIV, discourages many from being tested or seeking treatment. That same stigma and lack of education around current science leads to the prosecution of people living with HIV even in cases where no transmission occurred or was even possible, and can even fuel violence (look what happened to Cicely Bolden when she disclosed to her partner–he claimed to have killed her because a) having already had condomless sex with her, he must have acquired HIV; and b) assuming he had acquired HIV, it meant he was going to die soon).

However you feel about Charlie Sheen as an actor or a person, the public attention his disclosure has drawn is the perfect opportunity to educate the public. That’s a win-win for people living with HIV and for those at risk of acquiring HIV. Share the video above, the infographic below and the articles linked below–provided by TheBody.com–on social media and by email with your friends, family, coworkers, community and anyone else who might need some education.

How Can I Prevent HIV Transmission?

Five Ways to Stay Strong: How Charlie Sheen’s Disclosure Affects People Living With HIV
In the wake of Sheen’s disclosure, hyperbolic headlines can trigger old, familiar feelings of fear and shame. From Dr. David Fawcett, a mental health therapist who has been living with HIV since 1988, here’s vital advice on how people with HIV can stay strong when stigma flares.

Fact-Checking Charlie Sheen’s HIV Disclosure Interview
Warren Tong, Senior Science Editor at TheBody.com, goes point-by-point to bring scientific accuracy to Matt Lauer’s interview of Charlie Sheen and his physician on the Today Show.

Charlie Sheen Deserves Your Scorn, but Not Because He Has HIV
“Please keep this in mind: The jokes you make about Charlie Sheen won’t hurt him. He’s a super wealthy celebrity in a culture that worships those. But most people living with HIV don’t have those advantages, and the stigmatizing jokes and misinformation can and do hurt them.”

LISTICLE: 12 Ways to Give HIV Stigma a Well-Deserved Side Eye
An engaging set of GIFs of iconic female celebrities accompanies an insightful list of arguments to counter HIV stigma in daily life.

VIDEO: Aaron Laxton: Overcoming Depression and Drug Use, Living Boldly with HIV
After a traumatic childhood, Aaron Laxton had to overcome a military discharge, depression and drug use to come to terms with his HIV diagnosis. Now a popular video blogger and spokesperson, he lives a healthy and vibrant life with his HIV-negative partner Philip and works with homeless veterans facing similar challenges. In this immersive video, Aaron and Philip share their story.

HIV Prevention Portal
The best of the Web on HIV prevention, with features, infographics, video and links to a wealth of content.

TheBody.com’s “Ask the Experts” Forums
For decades, TheBody.com has been a reliable and accessible resource for people seeking clear answers about HIV. Whether asking about the risk of a personal encounter to finding the best possible treatment to stay healthy when living with HIV or more, our experts are on the ready to answer a myriad of concerns and queries.

Personal Stories of People Affected by HIV
The real life stories of people with HIV are a source of support for others, and a counterbalance to misinformation, stigma and fear.

And here are some more good articles about HIV in the wake of the Charlie Sheen disclosure:

Why an HIV Diagnosis Is Treated Like a Crime in Most U.S. States (The Daily Dot)
A great article about HIV criminalization laws and why they are ineffective at preventing the spread of HIV while perpetuating stigma.

Charlie Sheen and Celebrity HIV Status (The Feminist Wire)
Great perspective on why Charlie Sheen’s disclosure should not distract from the very real intersectional issues facing so many people living with HIV.

People Are Terrified of Sex (The Atlantic)
Insightful article examining the particular stigma surrounding sexually transmitted infections, including HIV.

Charlie Sheen’s Diagnosis Offers Teachable Moment (USA Today)
A solid look at various angles of the disclosure and the ensuing conversation around HIV.

What It’s Like to Live with HIV/AIDS Today (video) – (CNN Headline News)
Great interview with HIV advocates.

And here are some concrete ways reporters, bloggers and anyone speaking in or through the media can avoid stigmatizing HIV.

For more articles, news and information, keep an eye on our Facebook page and Twitter!

Organizational Sign-on Statement in Response to Michael Johnson Sentencing

Joint Statement on the Sentencing of Michael L. Johnson
Counter Narrative Project, Positive Women’s Network (PWN-USA), HIV Prevention Justice Alliance, National Center for Lesbian Rights

On Monday July 13, 2015, Michael L. Johnson was sentenced to 30½ years in prison (a concurrent sentence) after being convicted of “recklessly infecting a partner with HIV” and “recklessly exposing partners to the virus.” We are outraged by this sentencing and Johnson’s incarceration. This represents a failure of the justice system and a blatant manifestation of structural violence in the lives of Black gay men.

michael_johnsonThe State of Missouri was able to convict Michael Johnson without having to prove that he had any intent to infect his sexual partners nor demonstrate that he was in fact the person who transmitted HIV to his sexual partners. We are outraged by the criminalization, arrests and imprisonment of those prosecuted under HIV criminalization laws. We will continue to fight for Michael, to repeal HIV criminalization laws, to dismantle the Prison Industrial Complex, and to end the stigma and violence perpetrated upon people living with HIV by these laws. With this mission in mind, we are calling for the following:

The Right for People Living with HIV to choose if, when, and how they disclose
HIV disclosure is not safe under every circumstance. People with HIV may face risks ranging from loss of employment to personal humiliation, custody battles, and violence resulting from disclosure. In addition, the burden of proving disclosure rests on the person living with HIV, not her/his partner. While we are committed to helping create a world where disclosure of HIV status is safe, we reject the notion that disclosure of HIV status should be coerced by the State. Laws criminalizing alleged non-disclosure do not make it easier to disclose, and do not protect people from acquiring HIV.

An HIV prevention policy that relies on disclosure of HIV status fails to account for the fact that data shows a person is more likely to contract HIV from a sexual partner who is unaware of their HIV positive status and that effective care and treatment for people living with HIV reduces the likelihood of transmission to almost zero. The best approach for those who are HIV-negative or of unknown HIV status is to practice self-efficacy and care – an approach which could include prevention strategies such as: (1) Learning how HIV and other STDs are transmitted and effective ways to prevent contracting the virus (2) Taking PrEP (3) Using condoms (4) Getting tested with partners for HIV and other STDs (5) Engaging in lower risk sexual activities (6) Identifying support and resources to leave unhealthy relationships that don’t support protecting oneself (7) Confronting insecurities that lead oneself to seek validation by engaging in higher risk sexual behavior.

Today, HIV is no longer a near certain death sentence. With timely diagnosis and proper treatment HIV has become a manageable chronic disease similar to diabetes. People living with HIV can and are living long, healthy, and wonderful lives. And yet, the stigma remains. The truth is that criminalization of HIV is not really about our fear of HIV itself but the stigma that is attached to it. Those of us who are not living with HIV fear that if we contract HIV that we will suffer a lifetime of discrimination and rejection. Given this fear, those of us who are HIV negative should understand why someone who is living with HIV would not disclose her or his HIV status. Therefore, the real target is HIV stigma, including institutionalized stigma which manifests in laws and policies such as HIV criminalization.

Advocacy Against HIV Criminalization is Advocacy Against Mass Incarceration
HIV is a human rights issue, and criminalization of people living with HIV is a social justice issue. Resisting the Prison Industrial Complex means understanding how inequities in the HIV epidemic and sentencing disparities within the criminal justice system interface with laws that criminalize people with HIV. HIV criminalization laws serve as a means of expanding the categories of people subject to imprisonment, by virtue of an immutable characteristic-positive HIV status. In effect, this creates a biological underclass. HIV criminalization does not provide solutions nor will throwing people into prison lower HIV acquisition rates.

HIV criminalization is another manifestation of a broader agenda which has attempted to control the bodies, the sexuality, and the desires of queer and trans people and cisgender women, especially those who are low income and/or from communities of color. This is the same agenda that plays out in attempts to control women’s access to abortion and contraception and reproductive decisions. This not only includes denying low income women abortion services through Medicaid but the criminalizing of pregnant women who are drug users. The sexual and reproductive rights of communities of color, LGBTQ folks, and women has been policed and criminalized throughout the history of this country. Policies based on restricting our body autonomy, stirring up homo- and transphobia, and spreading HIV-related fears have never been and will never be just or sound public policy.

Alternatives to Criminalization: Towards Restorative Justice and Healing
We acknowledge the HIV epidemic has caused immense pain to many in our communities. As a society, we must be intentional about supporting and providing healing for those who have been affected by HIV. We firmly believe that HIV criminalization does not serve to meet these ends. Prisons will not save us. Criminalization is never a solution. Instead, we call for a wholistic approach based on restorative justice principles. Rather than resorting to criminalizing sexuality of people living with HIV, we should treat HIV as an issue of public health, individual health, and human rights and dignity. We must ensure that everyone who is living with HIV (and those who are not) have access to quality and affordable healthcare. As stated above, data shows that suppressing the viral load of a person living with HIV through effective care and treatment reduces the chances of HIV transmission to zero, even if condoms are not used. If states like Missouri are seriously concerned about reducing HIV transmission, they would do better to focus their resources on ensuring their residents living with HIV have access to high-quality, nonstigmatizing, trauma-informed, affordable healthcare. Instead they perpetuate a political agenda that cuts lives short and violates human rights, especially for people of color and those living in poverty, by refusing to expand Medicaid.

Even more importantly than individual actions, we must push for societal changes to the norms and stereotypes that inhibit sexual autonomy and encourage higher risk behaviors. We must advocate for sex education that challenges dominant paradigms around gender norms and heteronormativity. Thus, comprehensive sex education rooted in modern medical science, sex positivity, and harm reduction, and inclusive of all sexualities and genders is crucial. We must address systemic discrimination that places people at risk for housing, food and employment insecurity. We must advocate for sex education that challenges dominant paradigms around gender norms and heteronormativity. We must address systemic discrimination that places people at risk for housing, food and employment insecurity. We should demand media accountability on pathologized portrayals of Black, brown, and queer bodies and sexuality.

We should demand media accountability on pathologized portrayals of Black, brown, and queer bodies and sexuality.

Demanding Accountability
HIV criminalization laws are intricately tied to histories of racism, sexism, and homophobia. These forces in the present continue to enact injustice and perpetuate these laws. For this reason, we call for greater engagement of LGBT and racial justice organizations and leaders in HIV decriminalization advocacy. We know various local, state, and national organizations and individuals have already stepped up to the plate, but more boots on the ground are needed to fight back against these laws. LGBT and racial justice organizations must take more leadership around this issue by resourcing advocacy, defense litigation, attempts to repeal these laws at the state level, and drawing attention to HIV criminalization as a practice grounded in homophobia, racism, and sexual and reproductive oppression.

We are heartbroken at what has happened to Michael Johnson, but we are no less determined to fight for him, fight for his freedom, and the freedom of all our brothers and sisters incarcerated under HIV criminalization laws. We are also equally committed to standing in solidarity with all movements committed to ending oppression from the dominant culture of policing and criminalizing vulnerable communities. Together we become more powerful. We must resist. We will resist. We resist.

Black is not a crime.
LGBTQ is not a crime.
HIV is not a crime

Signed:
Charles Stephens
Executive Director
Counter Narrative Project

Naina Khanna
Executive Director
Positive Women’s Network – USA

Suraj Madoori
Manager
HIV Prevention Justice Alliance

Tyrone Hanley
Policy Counsel
National Center for Lesbian Rights

To sign your organization on to this statement, click this link or use the form below

Write About HIV Disclosure as the Complicated Issue it Is

This is Part 5 of the five-part statement “Five Things Media Makers Can Do NOW to Stand Up to HIV Stigma.” Read the full statement as a single article


 

  1. A person’s choice to tell someone their HIV status is complicated. Write about HIV disclosure as the complicated issue it is.

Telling another person, especially a potential partner, that you’re living with HIV is extremely complex, and not disclosing is never simply about “selfishness” or intent to harm – emotionally or otherwise.

Important points to keep in mind when reporting on HIV nondisclosure:

a. Simply saying “I’m HIV positive” is not always a safe option. The very real threat of intimate-partner violence may keep a woman from telling a partner she is living with HIV. The cases of Cicely Bolden and Elisha Henson, murdered in Texas due to their HIV status, are two devastating examples of this reality. Because of stigma and discrimination, disclosure may also place a person at risk for losing their employment, childcare provision, and more. Further, in the presence of laws that penalize people with HIV for knowing their HIV status, disclosing won’t protect a woman in a he-said-she-said argument in court, where the person who knows their HIV-positive status usually loses. Women are often the first person in the relationship to be aware of their HIV-positive status.

b. Preventing the transmission of HIV is each partner’s responsibility, not solely the partner who’s living with HIV. But unequal power dynamics in relationships, among other factors, can block the ability of either partner – whether living with HIV or not – to take action to prevent HIV. In many relationships, negotiating use of condoms or other prevention options may be difficult or even possible. One answer to empowering individuals in their relationships and fostering healthy, safe communication is to << address the root causes of inequities that impact our lives and relationships, and drive the HIV epidemic – and to ensure comprehensive, medically accurate sex education. The solutions is not to blame people for having HIV, or cast their sexual partners as “victims.” Where there is a victim, there must be a perpetrator, and having HIV is not a crime.

c. HIV stigma does not operate alone; for many women of all gender identities living with HIV in the US, other stigmas – based on race, class, gender expression, sexuality, ability, or other factors – were likely already a part of life before acquiring HIV, and exacerbate HIV stigma after diagnosis. Any trait that sets a person apart from a societal norm can be challenging to talk about, or to disclose. HIV status is no different.

d. It is the right of all cisgender and transgender women, including women living with HIV, to be sexual beings. A key aspect of internalized stigma for many women with HIV is being cut off from their right to safe, pleasurable, intimate relations. When journalists convey messages that shame the sexuality of people with HIV in their reporting – as if to even be having sex as a person with HIV is somehow wrong – or imply that finding love, having sex, or being in relationships is impossible for people living with HIV, they validate that assumption. A healthy dose of nonjudgmental sex-positive messaging in mainstream media could save and improve lives.

e. Everyone who is living with HIV has a story of how they acquired HIV. It is a part of a person’s history, and does not have to involve a “victim” and a person “at fault.”

How a journalist reports on a story can determine the way the story is received – and the tone of comments people leave. A more humanizing, less oppositional approach to reporting on disclosure could foster more civil, less reactionary online discussion around challenging, and potentially unifying, topics like HIV.


Like what you’ve read? Share this statement on Twitter, Facebook, and beyond using the hashtag #StandUptoHIVStigma!

 

There Are Facts and Fictions about HIV. Choose Facts.

This is Part 4 of the five-part statement “Five Things Media Makers Can Do NOW to Stand Up to HIV Stigma.” Read the full statement as a single article


  1. There are facts and there are fictions about HIV. Choose facts.

It is ridiculous that, more than 30 years and loads of research and lived experience into the HIV epidemic, we continue to encounter and fight the same myths and misinformation about HIV, in newspapers and on TV as well as in our daily lives.

Three key facts to remember:

a. HIV can only be transmitted through four body fluids getting into the body in very specific ways. The fluids that are capable of containing high concentrations of the virus – blood, semen, vaginal and rectal secretions, and breast milk – must come in direct contact with a mucous membrane or damaged tissue or be directly injected into the bloodstream (from a needle or syringe) for transmission to be possible. HIV transmission is not possible, under any circumstances, through a hug, a handshake, a toilet seat, sharing a cup, or eating food cooked by a person with HIV. Period. The fact that these myths persist in the general population is damaging to the wellbeing of people with HIV, and shows how great the need is for reporting on HIV that is not only accurate, but that actively counters misinformation.

b. People living with HIV can have HIV-negative babies. Now more than ever, women and men living with HIV are exercising their reproductive rights, and adding to their biological families. A baby born to a woman living with HIV has less than a 1% chance of acquiring HIV during pregnancy or birth if the baby’s mother has access to proper care and treatment. And if one partner in a couple is not living with HIV, the best prevention tool yet is for the partner who’s living with HIV to be on successful treatment. Then risk of transmission to the partner drops to virtually zero, even when having sex without condoms. Read more about that excellent and no-longer-new news here and here.

c. Laws that criminalize HIV-positive status do not protect or help women. As of this writing, 32 states and two US territories have HIV-specific laws that attach criminal penalties to the behavior and actions of people living with HIV. These laws are often framed in the media as protecting women “victims” from dishonest partners, but the laws help no one.  These laws codify stigma, and actually deter people from getting tested or being in care (a person who doesn’t know their HIV status cannot be prosecuted for HIV nondisclosure or exposure), thereby hindering public health solutions. In most HIV-related prosecutions, no transmission of HIV even occurred! Further, women have been sent to prison under these laws, and/or had their children taken away for no reason – often by partners who knew the woman’s HIV status but used the laws as a tool of abuse, coercion, or harassment when the woman attempted to end the relationship. Making it a crime not to disclose HIV-positive status should never be framed as the answer to addressing HIV in communities or to keeping people HIV negative.

 


Like what you’ve read? Share this statement on Twitter, Facebook, and beyond using the hashtag #StandUptoHIVStigma!

 

Talk to Women Living with HIV

This is Part 3 of the five-part statement “Five Things Media Makers Can Do NOW to Stand Up to HIV Stigma.” Read the full statement as a single article


  1. HIV is not just a man’s issue; it never has been. Talk to women living with HIV.

We, women living with HIV, articulate truth that must not be distilled. While living with HIV, we work, raise families, cook, help aging parents, bear children, march, protest injustices, lead the way at conferences, fall in love, and empower each other.

Women account for at least a quarter of people living with HIV in the US, and more than half of all people with HIV worldwide. This makes us the overwhelming experts. We stand bold, as in front-page news. We are not the stuff of margins.

African-American women were 64% of all women diagnosed with HIV at last count, in 2010. A third of transgender women in the US are living with HIV; the majority of transgender women diagnosed with HIV are women of color. If you are not engaged in conversations about HIV with women of color, you are really missing the point.  You may be missing the whole truth, the undisputed truth, the unadulterated story of HIV in the US.

Resources for finding women’s stories:


Like what you’ve read? Share this statement on Twitter, Facebook, and beyond using the hashtag #StandUptoHIVStigma!

 

Watch Your Language!

This is Part 1 of the five-part statement “Five Things Media Makers Can Do NOW to Stand Up to HIV Stigma.” Read the full statement as a single article


 

  1. Watch your language! 

The stigma attached to HIV is a significant barrier to living well with HIV.  By working together, we can raise awareness and help improve the lives of those living with HIV by being mindful of our language.  Language can be a tool to empower, or to further stigmatize.  Media messages can support HIV prevention, care, and treatment by using empowering, appropriate terminology:

a. Refer to those living with HIV as “people living with HIV.” Always put the person before the disease.  We are people first – we are not our disease.

b. Use “diagnosed with” or “acquired” HIV, instead of “infected with” HIV or “HIV-infected.”

c. Avoid words designed to shame or judge people – for example:

  • “promiscuous” to describe a person who has had multiple sex partners is a judgmental term and is often applied differently to heterosexual men, gay men, and women.
  • “prostitute” to identify a sex worker – the former is a legal term that does not apply in every context; the latter is preferred.
  • “clean” or “dirty” when referring to HIV status. Clean and dirty should only be used when referring to laundry and dishes, not people.

d. AIDS is a diagnosis and not a disease – understand the differences between HIV and AIDS. People cannot transmit AIDS. AIDS is not a virus. Read a detailed definition of “AIDS” (from The Well Project)

e. Refrain from using the term “full-blown AIDS.” This terms is still used by many media outlets – but there is no such thing as full-blown AIDS. The term is “antiquated, redundant, stigmatizing and confusing” – as one longtime HIV provider recently put it. Replace with “an AIDS diagnosis” or simply “AIDS.”

f. Apply the information above and below to headlines, the gateway to stories – and avoid sensationalist headers such as “AIDS-Positive Alabama Pastor Who Slept with Congregants Banned from Church,” from the Associated Press last October.

language_chart2_cropped

For more information: View the full slide set for PWN-USA’s webinar “Eliminating Stigma from the Language of HIV Communications”  – or view a recording of the full webinar including slides and voices of presenters


Like what you’ve read? Share this statement on Twitter, Facebook, and beyond using the hashtag #StandUptoHIVStigma!

 

We Stand with Michael Johnson: HIV Is Not a Crime

HIV and Justice Organizations Stand with Michael Johnson and All Black Gay Men, and Condemn Laws Criminalizing HIV-Positive Status

As organizations committed to human rights, social justice, and dignity for people living with and vulnerable to HIV, we release this statement in solidarity with Black gay men who have been organizing a response to the criminalization of Michael L. Johnson.

michael_johnsonAfter only two hours of deliberation by a jury in a trial that was fraught with misinformation about HIV transmission, misunderstanding about gay hookup culture, and inadequate legal counsel, a nearly all-white jury quickly convicted Michael Johnson, a 23-year-old Black gay man in St. Charles, MO, finding him guilty on five felony counts and sentencing him to 30 years in prison.

HIV criminalization is yet another tool used to police and incarcerate bodies that are too often poor, Black or brown, or queer-identified. In this case, Michael will be incarcerated for the next 30 years for allegedly exposing sexual partners to HIV, a condition that is chronic and manageable with proper care and treatment. This is atrocious. As a point of comparison, killing someone while driving under the influence of alcohol carries a sentence of 7 years in Missouri.

St. Charles is less than a half-hour’s drive from Ferguson, MO, a city that has made international headlines due to racist police brutality and a scathing record of racial bias in law enforcement.

HIV criminalization laws are widely understood to be based on hysteria, misinformation, and outdated science as it relates to HIV transmission.  Expert-led professional associations including the HIV Medicine Association, the Association of Nurses in AIDS Care, and the American Medical Association have taken positions supporting the repeal or modernization of these laws, and President Obama’s Advisory Council on HIV/AIDS passed a resolution in 2013 calling for HIV criminalization laws to be reviewed and repealed.

This particular prosecution and the media hysteria around it were fueled by homophobia, HIV stigma, and anti-Black racism embedded in portrayals of Black male hypersexuality.  Michael Johnson is not the first Black gay man to be incarcerated under these laws, and it is unlikely he will be the last.

Black lives and Black leadership matter.  We stand in support of the agenda released today by Black gay men:

  1. Support Michael Johnson while he’s in prison, continue to raise awareness about his case, work to support any potential appeals or strategies to reduce his sentence or overturn this ruling altogether.
  1. Continue to dialog with Black gay men around the country in person and through social media about the importance of opposing such laws.
  1. Repeal the laws that criminalize HIV exposure, nondisclosure, and transmission, in Missouri and nationwide.
  1. Challenge our allies in Black progressive organizations, criminal justice reform, HIV prevention and treatment, and the LGBT movement to take more of an active role in challenging HIV criminalization.
  1. Develop more capacity for Black gay men’s grassroots organizing.

When people with HIV are prosecuted under HIV criminalization laws, no justice is achieved. Stigma, fear, and, in many cases, racism, win. And independently of HIV, criminalization, incarceration, and police brutality disproportionately impact Black and brown communities, LGBT folks, and people living in poverty.

Black gay men cannot and must not be removed. With the recognition that anti-Black racism, homophobia, and HIV stigma are at the heart of the epidemic and the verdict in the Michael L. Johnson case, we as an HIV community must commit to centering Black leadership and to ensuring that the police state does not factor into addressing the HIV epidemic. Incarceration and prisons are never the solution.

We echo and amplify the love from the open letter to Michael L. Johnson to all Black gay men; we will continue to stand with all of you in this fight for Michael’s freedom.

To Michael: we love and will continue to support you.

To Black gay men across the nation: we commit to fight by your side in service of justice, love, and liberation.

In solidarity,

 

ACT UP Boston

Advocacy Without Borders

The Afiya Center

African American AIDS Activism Oral History Project

AIDS Action Committee of Massachusetts

AIDS Alabama

AIDS Alabama South

AIDS Arms, Inc

AIDS Foundation of Chicago

AIDS Project of the East Bay

AIDS Project Los Angeles (APLA)

APLA Health & Wellness

AIDS Resource Center Ohio

AIDS United

AILES

Alabama HIV/AIDS Policy Partnership

American Run to End AIDS (AREA)

Amida Care

Arkansas RAPPS

Believe Out Loud

Berkeley Builds Capacity

#BlackLivesMatter

BlaQueerFlow: The Griot’s Pen

The Body Is Not an Apology

BOOM!Health

C2EA (Campaign to End AIDS)

Cascade AIDS Project

CLAGS: The Center for LGBTQ Studies

The Center for Sexual Justice

The CHANGE (Coalition of HIV/AIDS NonProfits & Governmental Entities) Coalition

Chicago Black Gay Men’s Caucus

Desiree Alliance

End AIDS Now

End Discrimination & Criminalization Org

Fresh Anointing Ministries/Living Positive HIV/AIDS Ministry

Friends For Life

Full Of Grace Ministries

Gay & Lesbian Advocates & Defenders (GLAD)

Global Network of People Living with HIV/AIDS-North America (GNP+ NA)

Harm Reduction Coalition

Hawaii Island HIV/AIDS Foundation

Health Initiatives For Youth (HIFY)

Hepatitis, AIDS, Research Trust

HIPS

HIVE/UCSF

HIV Disclosure Project

HIV Justice Network

HIV Medicine Association

HIV Prevention Justice Alliance

House of Blahnik, Inc.

Housing Works

Houston HIV Cross-Network Community Advisory Board

Howard Brown Health Center

Intimacy & Colour

Iowa Unitarian Universalist Witness/Advocacy Network

Justice Resource Institute

Legacy Community Health

LinQ for Life, Inc.

LIVES WORTH SAVING INC

Louisiana AIDS Advocacy Network

Men’s Health Foundation

Metropolitan Community Church

Missouri HIV Criminalization Task Force

MrFriendly

MyFabulousDisease.com

National Black Justice Coalition

National Center for Lesbian Rights

National LGBTQ Task Force

NIA Women in Public Health

NO/AIDS Task Force (d.b.a. CrescentCare)

Northern Nevada HOPES

Ohio AIDS Coalition

One Struggle KC

Positive Iowans Taking Charge

Positive Women Inc. New Zealand

Positive Women’s Network – USA (PWN-USA)

PWN-USA Bay Area

PWN-USA Louisiana

PWN-USA-Ohio

PWN-USA Philadelphia Chapter

PWN-USA San Diego Region

POZ VETS USA INTL

Project Inform

Queerocracy

Sandshouse

SERO Project

SisterLove, Inc.

SOCIAL ACTION AND REHABILITATION CENTRE-SARC TRUST

Sophia Forum

Southern AIDS Coalition

Southern HIV/AIDS Strategy Initiative

Steps to Living on Facebook

Stopping  da Stigma

Sweet Georgia Press, LLC

Tougaloo Pride

Transdiaspora Network

Transgender Law Center

United Church of Christ HIV AIDS Network, Inc. (UCAN)

US People Living with HIV Caucus

Unity Fellowship of Christ Movement

Unity Fellowship Church Movement

Victim of HIV Criminalization

Visual AIDS

The Well Project

W King Health Care Group

The Women’s Collective

Women Together For Change

Women with a Vision

(List updated May 19, 2015)

Click this link to sign your organization onto this statement

Resources:

Commentary: Stop Locking Up Black Men for HIV, by Keith Boykin

On Uplifting Voices, Social Justice and Listening to HIV Criminalization Accusers, by Mathew Rodriguez

‘Tiger Mandingo’ is guilty because Missouri law ignores three decades of science, Jorge Rivas

Guiding Principles for Eliminating Disease-Specific Criminal Laws, Positive Justice Project

HIV Criminalization: What You Need to Know, Sero Project

 

Meet Mina, a Teen Living with HIV

By Mina

Hi! I’m Mina. I’m a teenager and I’m in middle school. I’m adopted and I have a big family. I’m HIV positive. I’m the only one of my family members that has HIV. My brothers and sister didn’t get it when they were born because only some babies born to a mom with HIV actually get HIV. I am one of the ones that did.  I’m just like any other middle schooler that you could ever think of except I just have one difference – HIV. Nobody can see it; it doesn’t show. I have to tell them.

I’m a very goofy and silly girl. I love to have fun with my friends and enjoy myself. I want to be a psychologist when I grow up. For some reason I get really good grades in English class even though it’s not my first language and sometimes I still say stuff wrong! I am good in science too. I like math a lot, but I totally suck at math. It’s so hard!

My hobbies are dancing and Kpop (Korean pop). I love watching people dance and copying their movements, especially hip hop dancing. And I like to choreograph – make up – my own dances for my friends and I to do for fun. But I like listening to Kpop music and watching Kdramas (Korean dramas) even better than dancing.

youngwomen_nyhaadSince I’m a kid, I thought it was a good idea for me to write something for National Youth HIV/AIDS Awareness Day. It’s a day when people think about HIV and issues that are important to kids and teenagers. We are different from adults and have our own problems and our own things going on. But there are some things that are a problem for kids and for adults too, no matter your age. Like getting treated badly, or being hurt by the things people do to us or say to us.

 

Words that Hurt

I did not like it at ALL when I found out that people with HIV and AIDS were being called “HIV infected.” I DO have an infection, but I don’t like to be called that. And if they think about it, no one who is HIV positive would want to be compared to an infection. No one period would want to be called that. It’s just not a very nice thing. It’s almost like calling someone the “R” word instead of saying they have intellectual disability. Something that is called “infected” sounds really disgusting, and gross. I have HIV, and I know for sure that I am NOT disgusting or gross.

It hurts my feelings a lot to be called “HIV infected.” A LOT. I would rather be called an HIV positive person, or a person with HIV. Not an “HIV infected person” or a “person infected with HIV.” If you have HIV you already know you got it through an infection, so isn’t it kind of like overkill to say “HIV infected” anyway? I mean, there’s no other way to get HIV. You can’t buy it from the store or order it online. So by saying “infected” next to HIV you’re saying something extra you don’t need. We don’t say “mammal dogs” when we talk about dogs because we already know they are mammals.

I want to change this. I don’t want any other kids or adults with HIV to have to feel the way I feel. To be hurt and feel like something is wrong with you when you hear or read how you are “infected.” I want kids with HIV to be proud of themselves. So a few months ago I talked to my mom about how I was feeling and I decided to start “Mina’s Law” and to let the whole world know that I am #NotYourInfection. I’m a girl, not an infection.

 

“Mina’s Law:” The #NotYourInfection Campaign

NotYourInfectionThe reason why I started the Mina’s Law thing is because I read in school about “Rosa’s Law” and I thought it was really cool. I don’t know if you ever heard of “Rosa’s Law” before. Rosa is a girl who is a little younger than me. She has intellectual disability just like my brother does. People kept calling Rosa the “R” word and since that was the actual name back then, it was hard to get people to stop using that word. But when people realized that that word was being used to bully people, they found something better to call it. They did this even though the “R” word was the real name and was very common, because people are more important than words. They changed all these laws and got rid of every place where they said the “R” word. So now Rosa and lots of other people don’t have to worry about being called words that hurt them.

I hope that I can change things for people who have HIV like me, just like Rosa did for people like her and my brother. I can’t make people stop calling us “infected” but the governors and the President and all those people in charge of laws can. I want “Mina’s Law” to be passed. I want all the laws to be changed so that they say “HIV positive” instead of “HIV infected.” I know that HIV IS an infection, but it’s also just a disease. And unless I’m hearing other diseases like measles and the flu that you also get through an infection being talked the same way, using “infected” all the time, I don’t want HIV getting treated that way. Actually, I don’t want any disease or sickness to be called that, even if it would be more fair. I’d rather it happen to none of us. It frustrates me to think about all these laws and all these different places where “HIV infected” is written. It doesn’t sound right and it doesn’t make sense to me. Am I supposed to feel okay when I get older reading that stuff about people like me? I’m young now, but I will get older. It doesn’t sound very pleasing to me, and I don’t think using “infected” helps other people accept us.

People are already scared of HIV and words that remind them that people have “HIV infection” just make them more scared so that they will keep thinking bad things about HIV and people with it.  Some people might not think being called “HIV infected” is a big deal. I think it is. It hurts and it makes me feel like I am dirty and unworthy and like I’m not a real person but just someone who can “infect” people. The word HIV doesn’t make me feel that way. Only the “infected” part does. To the people who don’t think it’s a big deal, I want to know how many of you actually have HIV? Maybe it’s not a big deal to you because nobody is ever going to call you that. You don’t live with HIV like I do, so maybe it doesn’t seem important. But has anybody ever called you a name? Didn’t that hurt?

My parents told me a long time ago before I was born they used to call black or African American people “Negroes” and they used to call Asian people “Orientals.” Nobody gets called those things anymore because it hurts people. Even if I AM a “Negro” I don’t want to be called that. I think that the people should get to pick what we want people to call us. Even if doctors and everybody else doesn’t see what’s wrong with saying “HIV infected,” they should care that it is hurting our feelings. I have HIV and I hate being called infected. And I bet if they take some time to think about it, other people with HIV don’t like it either.

A lot of people panic over HIV, but it’s not the worst thing in the whole entire world. I’ve been taking my meds since I was young and I feel healthy.  I feel like any regular teen; I just take meds. By looking at me, nobody would ever guess that I have HIV because you can’t tell by looking at people. We don’t look sick and we don’t look “infected” the way a cut or something that gets infected looks all nasty with pus and stuff. People are trying to stop a lot of the bad ideas and wrong stuff that is out there about HIV so that we can be treated like everyone else. But how is that going to ever happen if we use these kinds of words? If I tell somebody, “I’m Mina and I’m HIV infected,” or “I’m Mina and I’m infected with HIV,” it’s like I’m saying it’s okay to describe myself the same way you describe something that is disgusting. And nobody thinks infections are good things and I think the only reason people don’t seem bothered about it like I am is because they are used to it being called that or calling other people that. They don’t think it’s bad because that’s what people have always said. But just because something has always been that way doesn’t mean it’s right. I’m a regular kid LIVING with HIV and I don’t want to be called “infected with HIV.” Call me HIV positive, or call me Mina. Don’t call me infected. I’m #NotYourInfection.

 

Life with HIV

If you’re wondering if it’s troublesome for me to have HIV, it’s not. Listen, please: other people who have HIV – especially someone who just got it, because they might be panicking. Listen, young people, older people, teenagers, kids, whoever. It’s going to be okay. If you take your meds properly – even if you have to take it every single day of your life – at least it’s keeping you healthy. At least you can keep living your life and doing stuff like every other person, just with meds.  Just imagine it. I understand that some people might get annoyed by taking meds every single day, but try not to stress about it. If you have a migraine you take meds and if the first dose doesn’t work when it’s time you take another one. If you have a cold you take meds and you keep taking them every day until it is gone because you know by taking them you’re going to get better. Our HIV meds help us get better. If you decide not to take them, you might be okay for a while, but eventually you will probably get sicker and sicker and then when you go back on meds you have to take even more meds than you had in the first place. So what’s the point?

Me having HIV – it’s not a big deal. When I heard the news about me being HIV positive when I was young at first I didn’t really understand it because I didn’t know much about health stuff, plus I didn’t really know English. But when I got little bit older, I started to tell my friends and stuff.  I told my teachers and people at my church too. Everybody I know doesn’t know I’m HIV positive, but a lot of people do know. When I first told them, some of my friends got paranoid, but most got over it. And some of them didn’t have a problem with it at all in the first place. All of these people who know are still my friends today.

I know it’s different too because I’m young. Lots of HIV positive people who are older are going through a whole lot of bigger troubles and they have a lot of things going on in their lives. They might be worried about telling friends, telling their boss, telling the people who you date, stuff like that. Everybody is different, but I believe that I’d rather just tell them. When you’re ready. You might need some time to get ready. Get to know the people to make sure they’re someone you even want to have in your life. You might need weeks. You might even need a whole year! But you need to know that some people DO have a bad reaction. I’ve had that problem. Even though it’s not as easy to get HIV as everyone thinks, some people still freak out about it. You might have to lose some people if they can’t deal with it. But there may be some people who don’t react well but when they take some time to think about it then later they’re okay. They might need to search up some stuff about HIV and then they’ll realize that it’s not terrible.  People need to realize that people like me aren’t like some vampires or werewolves out to get people. We just have a disability – HIV.

I’m glad I got a chance to write this because I am too shy to talk on stage in front of big groups but I am fine writing down how I feel. Since I am a teenager I have changed from when I was little. I used to tell almost everybody I had HIV. Now I think it over first and take some time to get to know people. It’s NOT a secret, but it is private. Just because you might not tell the whole world doesn’t mean that you think it’s a bad thing that you have to hide. It’s like if you have a crush on a guy. That is SO not a bad thing. You might think it’s the best thing ever. But I would totally keep that private because it’s so important and you have to be careful who you tell to make sure you can trust them with something like that. HIV is like that kind of.  It’s only one thing about you. It’s not the only thing or the most important thing, but it is still important.

Please help me to get the world not to be so scared of HIV and people with it. Mina’s Law can help. I hope you will sign my petition to get Mina’s Law passed. There’s hardly any signatures right now and we need a whole lot more. And please tell other people. You can also do some #NotYourInfection selfies holding a sign with the hashtag on it. I have a selfie stick and I’m going to do one for #NYHAAD. Will you join me?

 

NotYourInfection

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Words Matter: Sharing as Much as I’m Comfortable to Stand Up to HIV Stigma

Words Matter: Sharing as Much as I’m Comfortable to Stand Up to HIV Stigma

By Tami Haught, PWN-USA Member

Tami Haught.
Tami Haught.

How we introduce ourselves makes a difference; the words we use matter.

When asked at a meeting to introduce myself, I will start with: My name is Tami Haught and I have been living with HIV for 21 years. Sharing that little bit of information about myself is selling myself short and not conveying the full message that I want to share with others. Not that being comfortable with sharing the fact that I am living with HIV isn’t a big deal; disclosure is never easy and opens you up to ridicule, stigma, discrimination, bullying, and rejection, and it took a long time for me to share.

I’ve been thinking though: Does this little bit of information make me relatable, or does it continue the perception that “HIV won’t happen to me”? However, this introduction shares more of my story, which hopefully more people can relate to, and shows that HIV can happen to anyone – after all, I am just like you:

My name is Tami Haught. I have been a mother living with HIV for 18 years. I am a daughter, sister, aunt, and friend living with HIV for 21 years. I was a wife living with HIV for almost three years. I have been openly living with HIV for 15 years.

I am beginning to think this more expanded introduction can help people relate to me better; after all, I am sure whoever I am talking with will be like I was, assuming HIV would never touch their lives. But talking about being a mother – everyone has one.

The other descriptions of my life open up the opportunity for people to ask questions:

Why have you only been living openly with HIV for 15 years??

This gives me the opportunity to share that for the first six years of living with HIV I lived in silence because of the stigma, self-shame, and fear after my diagnosis. My late husband (thus being a wife for almost three years) didn’t want to share our status; we lived in Texas, where the hate, fear, stigma, and discrimination were rampant.

Words matter; and to help reduce the stigma of HIV, we need to use as many as we feel comfortable sharing. If we give people the opportunity to self-identify similar traits or characteristics, others may begin to recognize that I am just like them or they are just like me. Once people who aren’t living with HIV realize people living with HIV are just like them, maybe we can truly make a difference – because we will not be just a number, the far-off “someone else.” HIV does not discriminate, and anyone can contract HIV.

Tami Haught is an Iowa-based PWN-USA member, SERO Project Criminalization Confererence Coordinator, Community Organizer for CHAIN (Community HIV/Hepatitis Advocates of Iowa Network), President of PITCH (Positive Iowans Taking Charge), and a member of the USPLHIV Caucus Steering Committee and the GNP+NA Board.