#WhyWeMarch: Toward Liberation and Justice

Art by Jennifer Maravillas
Art by Jennifer Maravillas

January 20, 2017: Today, a thin-skinned, authoritarian narcissist who lost the popular vote by almost 3 million votes is being sworn into the highest office in the United States, and arguably the most powerful position in the world. He has shown utter contempt not only for women, Muslims, Latinx and Black people, immigrants and the LGBT community, but also for the Constitution and its most basic protections, including freedom of the press; democracy; facts; and human decency.

Tomorrow, members of Positive Women’s Network – USA will join hands with an estimated 200,000 women and others who believe in freedom, justice, and equality at the Women’s March on Washington, and with an estimated two million women at “sister marches” in 616 cities around the world.
Continue reading “#WhyWeMarch: Toward Liberation and Justice”

Present a Session at the PWN-USA SPEAK UP! Summit

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March 31, 2016: Positive Women’s Network – USA (PWN-USA) is thrilled to announce our call for session proposals for SPEAK UP! A National Leadership Summit for Women Living with HIV 2016.

We invite proposals for various types of sessions (affinity groups, discussion group, or workshop) for SPEAK UP! Positive Women’s Network – USA’s 2016 National Leadership Summit.

SPEAK UP! A National Leadership Summit for Women Living with HIV will be held September 27-30, 2016, in Fort Walton Beach, FL. This Summit is open only to women with HIV, including transgender women with HIV.

In September 2014, PWN-USA held our first-ever National Leadership Summit to build advocacy skills and leadership capacity among over 200 women living with HIV from 26 states, the US Virgin Islands, Canada and Mexico. Participants from the 2014 Summit have gone on to do amazing work in their communities, fighting stigma, advocating for fair policies and supporting people living with HIV in their regions. The 2016 Summit will be designed for both first time participants and 2014 alumni as emerging and seasoned advocates to deepen advocacy and collective organizing strategies during a key election cycle.

You can read about the magic that happened at our 2014 Summit here.

The theme for SPEAK UP! 2016 is: Organizing for Collective Power.

We’re serious about building power. In this critical election year, we remain committed to our vision: a world where all people with HIV live free of stigma and discrimination. We work to achieve this by preparing and involving women living with HIV, in all our diversity, including gender identity and sexual expression, to be meaningfully involved at the tables where decisions are made about our lives, our communities, and our rights. We actively work at the intersections of race, class, gender, immigrant status, sexual orientation and more.

If you are interested in contributing to this growing and vibrant community, we encourage you to submit an abstract to conduct a session (workshop or other activity at the Summit). As a session leader you will ensure that information and skill-building activities are provided in line with PWN-USA values, priorities, and goals for the Summit.

There will be 5 core tracks at the Summit:

1) Rights, Power and Justice

2) Building Leadership Skills

3) Policy and Advocacy

4) Media & Strategic Communications and

5) Advancing the HIV Research, Care, and Prevention Agenda

Final decisions on session proposals will be made with an eye towards meaningful involvement of women with HIV and communities of color as presenters. In particular, we seek strong representation of women living with HIV, people of color, trans and gender non-conforming individuals, and young people as presenters. We welcome abstract submissions from well-intentioned allies and encourage allies to submit in collaboration with women living with HIV.

The deadline for proposal submissions is 11 PM EDT, Friday, April 29, 2016.

For more information about submitting your proposal, click here.

To submit your proposal, click here or download the Word version of the proposal submission form.

 

Reproductive Rights Must Be Part of Our Battle

Positive Women’s Network – USA Statement on
World AIDS Day 2015

Dec 1, 2015 – Just four days ago, an atrocious act of terror was perpetrated against Planned Parenthood, an essential source of healthcare for working and low-income women, men and young people in the US. As women living with HIV who have benefited from the healthcare and education services provided by Planned Parenthood, we condemn this brutal violence. We grieve for the loved ones of Jennifer Markosky, Ke’Arre Stewart and Garrett Swasey. And we mourn the devastation of women’s sense of safety, bodily autonomy, and threats to well-being for healthcare providers committed to delivering woman-centered care.

As women living with HIV, many of us have used and still depend on the vital health care services Planned Parenthood provides, including access to HIV testing, screening for sexually transmitted infections, pap smears, and the means to determine if, when and how we have children. We will continue to fight for these services.

Make no mistake. Attacks on Planned Parenthood are assaults on women’s rights to health, dignity, and self-determination.

While brutal violence like the recent incident in Colorado is typically met with condemnation by leaders of all political stripes, a large number of elected officials have waged a relentless war on Planned Parenthood specifically and women’s health more generally in recent years. The growing movement to deny essential healthcare to working and low-income women—accompanied by simultaneous and persistent efforts to decimate programs critical for working and low-income families – including food stamps, Medicaid, and paid parental leave — marks a deep disdain for women. These leaders would not only deny us the right to make decisions about whether, when and under which circumstances to have children – they also seek to deny the support that makes having and sustaining families a feasible reality.

A new study shows that states with higher funding for social services have much lower rates of HIV incidence and of AIDS deaths—signaling that, if the U.S. is serious about “getting to zero,” we have to be willing to challenge the reactionary idea that the working classes and the poor fare better when forced to “pull themselves up by their bootstraps.”

We must also be willing to challenge the rhetoric espoused by those who call themselves “pro-life” while tacitly or explicitly encouraging hatred, dehumanization of women, and violence. As women living with HIV, we know all too well the power of language to affirm or to dehumanize; to show respect or to stigmatize and criminalize. Hostility toward sex education, sexuality and reproductive rights is detrimental to us all—yet is evidenced by the fact that our government released a National HIV/AIDS Strategy in which the word “reproductive” does not even appear.

Women living with HIV—like all women—deserve access to affordable healthcare including the full spectrum of sexual and reproductive services–and yes, abortion and contraception services–that meet all of our health and family planning needs. Since the beginning of the epidemic, the sexual and reproductive needs and desires of women living with HIV have been ignored and dismissed by those in power. On this World AIDS Day 2015, we must take a stand to assert that women with HIV deserve not only life-saving medications, but the right to self-determination—and the full spectrum of healthcare services and options to make that right a reality.

Advancing Collaborative and Shared Leadership and Participation Inclusive of Women Living with HIV

Remarks Delivered at the White House’s National Women and Girls HIV/AIDS Awareness Day Event, “Stepping Out of the Shadows: HIV & Violence against Women and Girls”

By Vanessa Johnson, PWN-USA National Training and Leadership Director

bio - vanessa johnson - headshot
Vanessa Johnson, JD.

I bring you greetings from the Ribbon Consulting Group, a Washington, DC-based firm where I serve as one of its Co-Directors. I am also a Board member of the Positive Women’s Network-USA (PWN-USA) as well as the National Women and AIDS Collective (NWAC).  I was diagnosed with HIV 25 years ago in 1990, the same year I graduated from Temple University’s School of Law.

I want to thank Douglas Brooks, Director of the Office of National AIDS Policy, for inviting me to speak and I want to acknowledge all the other women living with HIV who are with us today, and those who are not. I stand in solidarity with them.

It is on this day, the 10th Anniversary of National Women and Girls HIV/AIDS Awareness Day (NWGHAAD), that I begin my remarks by noting, the World Health Organization, as one of its strategies to end the global AIDS epidemic, authored three international declarations which make commitments to support the greater involvement of women, including women living with HIV, to promote and protect all human rights and fundamental freedoms.

Here in the United States, the basis for supporting the participation of women living with HIV is found in the Denver Principles, an historic document authored in 1983, which outlines the rights of people living with HIV as well as recommendations for participatory leadership and decision-making. Over the course of this 34-year fight, people living with HIV, both men and women, have worked tirelessly to ensure we have a stake in an ongoing battle which has taken the lives of over 600,000 Americans and threatens the health and well-being of another 1.2 million Americans, including 300,000 women, who are living with HIV today in the U.S.

For example, today’s focus on domestic violence and women would not be possible without the leadership and advocacy of women, especially women living with HIV.  The leadership of women living with HIV led to the March 2012 Presidential memorandum establishing a White House working group on the intersection of HIV/AIDS, violence against women, and gender-related health disparities. President Obama’s signing of this memorandum might not have been possible if it were not for the willingness of women in a domestic violence shelter in Duluth, MN, to share their lived experiences with intimate partner violence.

Without their stories, we might not have an understanding that violence against women is grounded in power and control. Likewise, if it were not for the willingness of countless women living with HIV to tell their stories of past and present experiences with violence and trauma, we might not be here at this moment in time affirming what was noted in earlier presentations and the Presidential Advisory Council on HIV/AIDS (PACHA) Resolution that, “women most at risk for or living with HIV are more likely to experience sexual or intimate partner violence one or more times in their lives.”

I stand in here in hope that both communities of women, HIV and domestic violence, which are inextricably linked, will build upon a shared vision to create a world where women, regardless of HIV status, no longer experience violence in their lives. We together must advance collaborative, shared, and supportive leadership which:

1) brings gender equality and human rights perspectives to the forefront;

2) clearly recognizes the role and influence of all women, including women living with HIV;

3) spearheads strategies that effectively address the underlying causes of HIV such as violence against women, feminized poverty and women’s limited voice in decision-making; and

4) reminds our national leaders and partners that the best outcomes are always ones that start with meaningful involvement of affected populations.

Thank you.

Watch the video from the White House event (Vanessa Johnson’s comments begin at 2:27:00)

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Read more about what PWN-USA members are doing on NWGHAAD

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Stepping Up Commitment: Women and Girls Living with HIV Must Matter Every Day of the Year

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174 

March 10, 2015 – Each year, on March 10, National Women and Girls HIV/AIDS Awareness Day (NWGHAAD) is observed in the US. But at Positive Women’s Network – USA (PWN-USA), a national advocacy network of women living with HIV, we work on addressing the HIV epidemic among women year round. We don’t expect everyone to do that. There are many other issues and communities that require sustained focus and commitment.

However,  the federal government has consistently failed to prioritize women in the domestic HIV response:

Consequently, we are compelled to point out the myriad ways in which violence is perpetrated against women living with HIV. The intersections between HIV, violence and trauma for women are well-documented in the literature, and we applaud the White House Office of National AIDS Policy (ONAP)’s lead role in addressing this critical issue, forming a federal interagency workgroup to address it, and making this issue the centerpiece of its NWGHAAD focus this year.

However, it is important to recognize that violence comes in many forms – from institutions, policies, and practices that systematically render transgender people invisible, to power structures that consistently fail to meaningfully involve women and other communities impacted by HIV in generating recommendations, solutions, and decisions about policies and programs that impact our lives.

To effectively address the HIV epidemic among women, including the estimated 300,000 women living with HIV in the United States, the next National HIV/AIDS Strategy – which will be released this year – must include strategic priorities that address women’s needs.  These include the need for high quality, non-stigmatizing sexual and reproductive healthcare for women with HIV throughout the lifespan, implementation of trauma-informed practices in care settings, and family-centered services that facilitate and support access to care for people living with HIV.

Most important, people living with HIV must be meaningfully involved in crafting sustainable policy and programmatic solutions that reflect the realities of our lives.  On #NWGHAAD, and every day of the year: Nothing about us #WithoutUs.

Do All Black Lives Matter?

On National Black HIV/AIDS Awareness Day, Amplifying the Voices of Women, Youth, and Transgender Women

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174

February 7, 2015 – This National Black HIV/AIDS Awareness Day (NBHAAD), Black women remain 20 times more likely than their white counterparts to be diagnosed with HIV in their lives – and Black women get sicker, and die faster, from HIV-related complications than white women.

Women living with HIV are overwhelmingly Black women. Throughout the three-plus-decade history of HIV in the US, this has always held true. No demographic shift made it so; Black women have always been most heavily impacted by HIV.

National-Black-HIV-AIDS-Awareness-Day-Carousel-5_HomeThis NBHAAD occurs against the backdrop of a national, intersectional movement asserting that #BlackLivesMatter, with unprecedented focus on the realities of pervasive threat under which African Americans live. But do all Black Lives Matter in all arenas? Where is the federal attention for the myriad concerns of Black transgender women, who face interpersonal and structural violence, devastating rates of HIV incidence, and outrageously poor health outcomes? The National Black HIV/AIDS Awareness Day toolkit does not include a single mention of Black transgender women, who sources report have a life expectancy of 35 years.

Where is the federal attention for Black women, who were present only by implication in the first-ever National HIV/AIDS Strategy? The President’s 2016 budget, released earlier this week, held all parts of the life-saving Ryan White program intact – except, for the second year in a row, the one part of Ryan White designed to serve women and youth. An attack on services for women with HIV is, by virtue of statistics, an attack on services for Black women. In a world where Black women are consistently devalued, this sends a dangerous signal about the value of women’s lives, health, and well-being.

There is a growing body of research into the effects of past or recent trauma on overall health, and the tremendous potential benefits of trauma-informed care for women with HIV. Addressing and healing trauma has been called the “missing ingredient” to providing truly high-quality care for women with HIV. And Black women, including transgender women, disproportionately experience virtually all circumstances that have been shown to cause trauma – for instance, poverty, histories of racism, incarceration, the constant, looming threat of physical violence by police.

Does the Office of National AIDS Policy (ONAP) believe that #AllBlackLivesMatter? This NBHAAD, PWN-USA urges ONAP to show its commitment to this reality: by supporting the protection of services tailored for women and youth. By making Black and transgender women a priority, and trauma-informed care a mandate, in moving forward with the National HIV/AIDS Strategy. By striving to improve the real lives – millions of lives – behind the hashtag.

Everything You Need to Know About SPEAK UP!

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Lepena Reid, Janet Kitchen and Rose Todd, South Florida

SPEAK UP! A National Leadership Summit for Women Living with HIV is just one week away! Here’s everything you need to know, whether you’re coming to the Summit or following the happenings there from afar:

PWN-USA SPEAK UP! Summit Orientation Webinar – slideshow and voice recording of a helpful presentation on the ins and outs of the Summit (here’s a PDF of just the slides from the webinar)

SPEAK UP! Summit Official Website – the place to go for the full program, information on travel, a list of our generous sponsors, and much more!

“I’m Going to SPEAK UP! Because …” – videos and images from SPEAK UP! Summit participants about why they’re making the trip to Fort Walton Beach

Want to volunteer at SPEAK UP!? Contact Nerissa Irizarry to sign up: 510.698.3811 | nerissa.pwnusa@gmail.com

Here’s some background information on the Summit if you want to know more!

Like us on Facebook and follow our Twitter account and the hashtag #PWNSpeaks for up-to-the-minute updates from the Summit!

For those who are coming to SPEAK UP!:

SPEAK UP! A National Leadership Summit for Women Living with HIVWHAT DO I BRING??

  • Dress – Summit dress code is casual to business casual for hot weather. Bring your best pj’s because you will be sharing a room and we are planning a pajama party! Other suggestions:
  • Beach towels
  • Enough Meds – couple extra days supply just in case
  • Medical insurance card
  • Cellphone charger if you have your cell
  • Laptop and charger if you need one
  • State-issued ID
  • Sunscreen and hat for the sun, bathing suit if you plan to get in pool or ocean
  • Refillable water bottle
  • Extra business cards if you have them for networking
  • $30, in cash or on your debit card, to present at check-in for hotel incidentals (will be refunded)

Upon arrival at the Ramada Plaza Beach Resort:

  • 2 pm: Summit registration
    Fill out a few forms, get your program & conference bag!
  • 3 pm: Hotel check-in
    You will be assigned a shared, double room with mini-fridge & microwave
  • 5 pm: Summit opening session and dinner begins

Florida, here we come!!!

Looks like we made it!
Looks like we made it!

“We Make a Statement Just by Living Our Lives”: Women Long-Term HIV Survivors Speak

Yesterday, June 5, marked the first annual National HIV/AIDS Long-Term Survivors Awareness Day. Those who have lived several decades with HIV have advocated, fought, survived, thrived, faced immeasurable loss. This includes longtime supportive allies, activists, care providers and family members, who are every bit long-term HIV survivors in their own right.

On this herstoric day, we asked PWN-USA members who’ve been living with HIV for more than 20 years to share how they’d want to see this awareness day acknowledged in the U.S.

helen_goldenbergHelen Turner Goldenberg, Texas; Diagnosed in 1984

I was diagnosed on March 13, 1984, with what they called “full-blown AIDS.” I was an assistant vice president at Bank of America in San Francisco. Fast forward through many challenges, through many illnesses, through medications where either you died or you didn’t, to watching my employees as assistant vice president at Bank of America, 11 of them diagnosed, dropping like flies around me — but I’m still here, in 2014.

It’s a new thing we’re doing. It’s the first year that we’ve had Long-Term Survivor Day. They’re saying Let’s Kick Ass — because the bottom line is, to me, we should be looking at this day and acknowledging, celebrating, thanking, congratulating, those that are still here doing this work. Because after getting over my big nonconfront, a whole bout with agoraphobia, a whole bunch of stuff, after getting through all of that, I’m still here, and excited to do the work. Because I don’t want anyone to have to go the trail that I had to go through! I have the experience and can help them not to have to do that.

So just acknowledge that day. Acknowledge me, congratulate me: I’m still here, in the fight, and I want you to do well! I don’t want you to ever have to go through anything that I went through.

pat_kellyPat Kelly, South Carolina; Diagnosed in 1985

I happen to be a long-term survivor — this year is 29 years for me. And I would love to see this day acknowledged by people that have been living a long time with HIV, to be able to tell the message that HIV is no longer a death sentence. I’m here all this time because of great medications, great care and being a great advocate for myself. Being a part of PWN-USA has really helped me to further my education and my knowledge and to know that I should be honored! All those people living 20-plus years should be honored. Long-term survivors should be very much aware that we make a statement just by living our lives.

 

 

tammy_kinneyTammy Kinney, Georgia; Diagnosed in 1987

I’ve been diagnosed for 28 years. I got diagnosed in October 1987. And I am a long-term survivor.

I want people to understand and get educated that we are living with this virus, that it is not a death sentence. When the virus first came out in the early 1980s, even health care workers were telling people that they were not going to be living past 5-10 years. But I am a testimony, along with other voices out there, that you can live. This virus is controlled through medication and awareness and education and motivation and empowerment. We can live with HIV.

 

 

susan_mullSusan Mull, Pennsylvania; Diagnosed in 1993

I am just so delighted that this is the first fabulous National HIV/AIDS Long-Term Survivors Awareness Day — I was diagnosed in 1993. How amazing is that? I didn’t even think I would live to be a grandmother. That’s amazing!

But for me, personally: I would love to have some kind of really cool thing in every community where there are women living with HIV, to maybe have at a convention center parties and acknowledgements or big banners! Or posters, billboards along highways saying: “We love our mothers, we love our sisters, we love our aunts, we love all the women who have nurtured us, and this is National HIV/AIDS Long-Term Survivors Awareness Day, and we honor them all — we stand on their shoulders!”

I’m a little bit weepy right now because so many of them have died.

And also, this history-geeky part of me would love to acknowledge women who, early on in the movement, as early as 1981 — with the shift in the naming of what people used to call GRID which became named AIDS, and some of the people diagnosed early on that are still living, after 30 years, can you believe that they’re still living — women that did a lot of the research and the academic work to put together a lot of the movement kind of things that happened with ACT UP early on: I would love even more done to honor those women who poured so, so much of their lives into the movement. It meant everything to the rest of us to have people early on, when everyone was so discriminated against — this whole movement was just not a beloved movement around the world, and there weren’t so many of us together, PWN-USA didn’t exist, a lot of us were not diagnosed or not as savvy or not as aware then.

Those early women, those early historians, those early activists, let’s put them on a United States postage stamp. Amen!

 

linda_scruggsLinda Scruggs, Maryland; Diagnosed in 1990

I think that if I look at how do we celebrate or acknowledge or bring awareness to long-term survivors of HIV, it’s really to remind the world, the country, that not only are people living longer with HIV, we’re surviving and we’re thriving. I think that folks 20, 30, 33 years into this: I would like to see who they are! I would love for the U.S. and the world to be able to see that we’re not just the images that the media is used to showing of who we are. So I would love to see a campaign of just the faces of long-term HIV survivors.

PWN-USA’s 2014 – 2016 Strategic Plan

Every day, PWN-USA inspires, informs and mobilizes women living with HIV to advocate for changes that improve our lives and uphold our rights.  In 2013, we went through an extensive strategic planning process and listened to hundreds of stakeholders.  Over 200 women living with HIV contributed to our newly launched vision, values, and goals.  Check out our strategic plan today!

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Women, Violence and HIV

ImageBy: Loren Jones

As the oldest and only girl born to a welfare mom who had six children in nine years , way back in 1952, in North Philadelphia, I long ago accepted violence as a way of life. I didn’t realize until Junior High School, when I was bussed to a middle class white school, that not everyone yelled, sc reamed, and beat their children to get them to behave; not everyone knew someone who had been murdered on their block, and not every Christian household lived by “spare the rod, and spoil the child.”  If your partner only slapped you when he was mad, so what? You were lucky.  It’s not the same as a black eye or a broken arm.  And of course there was no HIV.

60 years later, the world has definitely changed and it is mostly for the better.  But why is it that so many poor black women, even in big cities with lots of good doctors, lots of buses and trains to get to them and free medications, still are not doing well in their fight for survival with HIV.  Many are still dying sooner in an age when we should all be looking forward to living as long, and as productively as those without HIV.  Could it be the violence that is still in so many of our lives?

I have lived with HIV for at least 28 years that I know of, and I am fortunate to be both a member of the Board of Directors for Positive Women’s Network-USA, and a member of Alameda County’s Ryan White Part A Community Collaborative Planning Council. As part of our yearly Ryan White Needs Assessment Activity required by HRSA, I was able to make a push to have some of our consulting money spent on gathering data and making recommendation for improving the quality of life and survival rate of HIV+ women in our community who also have histories of Intimate Partner Violence (IPV).

Our 2013 survey of 97 consumers showed that 26 (more than 1 in 4) were survivors of IPV. 75% of the people who completed the survey were People Living with HIV and 92% of those who are positive experienced IPV. More than half of those who experienced IPV felt that their experience with IPV affected whether they became HIV+ or had an impact on their health.

62% of the survey respondents were women, 20% white, 27% African American, and 28% Latino.

Here are a few follow-up recommendations to aid us in charting a pathway to a better quality of life, self esteem and health outcomes for HIV-positive people who experience intimate partner violence.

  1. Increase the existence and availability of psychosocial and clinical supports for perpetrators of IPV (both male and female) to help them recognize and deal with their behaviors in order to heal themselves, gain new skills to handle triggers, and reduce violence, and have healthier relationships overall.
  2. Raise visibility about how to identify IPV for oneself or others, promote IPV resources, and reduce shame, and stigma about IPV through a social marketing/and or social media campaign.
  3. Ensure the existence and appropriateness of IPV services for both survivors and perpetrators of IPV.
    1. Needed services may include: housing support, assistance with protective custody of children, substance abuse treatment, mental health support, emergency medical treatment, employment assistance, childcare, assistance with ADAP, assistance with new healthcare under the Affordable Care Act, and other needed government programs, and help with developing a safety plan.

Of course our service providers first need to ask the question about possible violence in the lives of their clients and be educated to provide trauma informed treatment.  I am confident however, that if we don’t let the flag fall, this could be the year that we make progress in breaking the links between women, violence and HIV.

Survey information and recommendations provided by: Facente Consulting, Richmond, CA (www.facenteconsulting.com)