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Why Women & Girls HIV/AIDS Awareness Day Matters: Voice of Positive Women By Naina Khanna

I came across this article first on Wayne Hicks’ HIV/AIDS Awareness groupsite, and he linked it to the original article. But it is such a great article that I had to repost it here. Originally posted on: Click the Title for the original post. It’s been posted here uneditted by us.


Why Women & Girls HIV/AIDS Awareness Day Matters: Voice of Positive Women

By Naina Khanna

Here in the United States, women comprise about 27% of HIV infections, up from about 8% in 1984. In many countries around the world, women already represent over 50% of HIV infections. Rates of sexually transmitted infections among youth and teenage pregnancy have risen over the last several years – both indicators that we may soon see a corresponding rise in HIV infections among both young women and men. And, although generally considered a chronic manageable condition in the U.S., HIV continues to be the leading cause of death among African American women aged 25 to 34 years old.

Yet most of the general public in the U.S. think of HIV as a men’s disease and some members of the HIV advocacy/policy community have gone so far as to say “HIV/AIDS in this country is a men’s disease.”

The U.S. Positive Women’s Network believes we urgently need a comprehensive, outcomes-oriented National AIDS Strategy that addresses homophobia, HIV stigma, and gender and racial disparities in access to awareness, prevention, testing, treatment and care.

This Women & Girls HIV/AIDS Awareness Day, I spoke to several HIV-positive women leaders around the U.S. to hear their perspectives on why HIV matters, in their own words. Each of the women interviewed are also mothers and founding members of the U.S. Positive Women’s Network (PWN), a national membership body of women, including transgender women, living with HIV.

Interviews were conducted with:

Demetra Tennison, Peer Advocacy Coordinator at Women Rising Project in Austin, TX.

Loren Jones, Bay Area Positive Women’s Network Organizer, Oakland, CA.

Vanessa Johnson, Executive Vice President, National Association of People with AIDS, Washington DC metro area.

Cinnamen Kubricky, Peer Advocate at Christie’s Place and Co-chair of Planning Council, San Diego, CA.

NK: Why does Women and Girls HIV/AIDS Awareness Day matter?

Demetra Tennison: Early in the epidemic, women weren’t seen as people at risk. Yet women and babies were dying. And today we need to bring awareness so women don’t see this as a disease to feel isolated about or oppressed. It concerns me that women are still dying from this disease – due to being diagnosed late, showing up in the Emergency Room with a CD4 count under 200, and refusing to take medication because of stigma.

Cinnamen Kubricky: We need to educate women and girls that this disease is 100% preventable. Knowledge is power, ladies! With education we can save the next generation.

Loren Jones: There is a rise in HIV/AIDS in women across the board of all ages, races, ethnicities. Numbers should be going down but are going up — because women don’t perceive themselves as being at risk for HIV.

Vanessa Johnson: It’s the one time of year we see a particular focus on women as a whole group – cutting across race, age, socio-economic status. March 10th is the day all about ALL WOMEN. But March is also Women’s History month and we need to understand women’s health and HIV in the context of women’s history. We need women’s organizations that have not traditionally focused on HIV/AIDS to issue statements to their constituencies that this day matters, and HIV/AIDS matters and is a real issue for women, because it is cutting short our productivity and our lives and that’s less of a contribution we can make to our community.

NK: What do you want people to know this Women and Girls HIV/AIDS Awareness Day?

DT: As a woman living with HIV, diagnosed late in my own illness, I want people to know this can happen to anybody. I’m a mother, a sister, aunt, and niece. HIV does not discriminate. No person is exempt from contracting HIV. We have this Awareness Day because we still need it!

CK: If you get tested early on this disease can be manageable – it is not a death sentence. And even if you’re HIV positive, you can do great things. All women’s overall health is important – HIV is just one facet of who we are.

VJ: I want them to know we have to stop judging people. Our judgments about HIV/AIDS are really judgments of what we think about various types of people in this country, rather than just recognizing everyone as human beings. Also, while there are a significant number of people today living with this disease, there are also a lot of women and men who died because our government didn’t act quickly enough. Our government’s shortsightedness and homophobia has cost the loss of many lives. The U.S. government basically signed a death warrant for thousands of people. We failed to protect mothers, wives, sisters, the folks who take care of our families and communities. And when you don’t take care of the caretaker you are doomed.

NK: In your geographic region, what are general attitudes about HIV?

DT: In Austin, TX, people are aware HIV exists but really don’t know exactly how it’s transmitted. People especially don’t believe a partner they’ve been with for a long time can infect them.

CK: San Diego is very conservative. People don’t talk about HIV. The general thinking out here is that only gay men and drug addicts are at risk. Stereotypes could cost Southern Californians their lives.

LJ: I live in Berkeley, CA near a college and I see a lot of risk behavior. Berkeley is a party town, and make no mistake – alcohol is still the #1 party drug leading to sexual activity. I don’t see enough attention or conversation about sexual risk.

VJ: My son says people are aware but they’re not afraid. I have to respectfully disagree with my son. Older people are afraid. Younger people are in denial. There is a level of silence and secrecy that keeps us paralyzed.

NK: How have you seen attitudes change towards women with HIV over the course of your diagnosis?

CK: The biggest changes have been in HIV service delivery. In 1993 they didn’t have gynecological services for women with HIV or doctors specifically serving women. There was also very little help for children – either HIV infected or affected (family members of those living with HIV)

VJ: Yes. Now there is more of an acceptance that the issue of women needs attention – and that it’s not at the expense of anyone else! In the Black community with the National Gay Black Men’s Advocacy Coalition and the National Black Women’s HIV/AIDS Network we’ve started to have discussions about what we can do to advocate for each other. But I don’t see that level of conversation yet in the community at large, and that’s the only way we will actually all get our needs met.

NK: What role do you think HIV-positive women can play on Women and Girls HIV/AIDS Awareness Day?

DT: I would say it’s our job to educate others. If you are taking care of yourself and know what it’s like to get a diagnosis, go educate other women. We have to be our sister’s keeper – help each other out. Show other women that HIV doesn’t have a look anymore so you can’t tell if someone is infected, and that if a woman is positive, she can live with this disease. It doesn’t have to control her life.

CK: We need to speak out and stand proud. Support the next woman who doesn’t know her status to get tested – and make sure she knows that if she tests positive she can live with this. We are survivors and can accomplish great things – from graduating college to raising a family.

LJ: I think we need to show our variety – that there are woman of all ages, histories, lifestyles, who have been living with HIV for varying numbers of years. People need to be really clear that you cannot tell by looking at somebody who has HIV. If you actually took pictures of women with HIV in the U.S. you’ll see relatively healthy looking American women who sit next to you on the bus every day.

VJ: Our goal as the Positive Women’s Network is to support those women willing to speak out and show the totality of a woman’s life. If she is HIV positive she still goes to school, she’s still a mom, she still leads a normal life and has a lot of other concerns. Sometimes there will be negative consequences to speaking out and we have to support women through that as well. But until we normalize HIV nothing is going to change. Support means supporting the whole person’s life. HIV is one issue- but we are still raising a family, going to school, running an organization. It adds a lot of value to disclose your status and if you want to live long with this disease you have to tell someone. But also we have to provide people with real choices about disclosure and support those who make a conscious decision not to disclose – not because they’re afraid. On Women & Girls HIV/AIDS Awareness Day, HIV positive women should partner with folks in the community – service providers or places where conversations about HIV are NOT being had. HIV positive women are dealing with many other things – diabetes, hypertension – and by finding new places to speak up they can free other women to talk about what’s going on with them.

NK: As a positive mom or grandmother, what are your hopes for the next generation(s)?

DT: That this won’t be a taboo subject – it will be something they can openly talk about. Also that youth can be accurately educated and know what they need to know to practice safe sex. It’s one thing to say “don’t have sex”. You have to think about reality. Teenagers are having sex and I want them to be on top of their game and know their options. I do prevention work and education in schools and many teenagers don’t know their options because schools are just teaching abstinence without giving youth the information they need to make decisions.

CK: As a positive mom, my hopes for my children are that they will be more accepting, educated, and that they won’t be ashamed or hide if they know someone who has HIV. They need to be educated about STDs, HIV and sexuality in general. Also that my daughter does not become another statistic – she had all her tests last week and is negative and feels good about it. My daughter is determined to become a researcher and find the cure for AIDS.

LJ: I want to see the epidemic end. Not just lessen. Not just data being collected more accurately. I want to see a vaccine, a cure, whatever it takes for this to end completely. One thing this country proves over and over is that we can do anything we have the will to do — so we need to exert our will to put a stop to this epidemic.

VJ: That on some level they are paying attention. That we as adults will do what we need to do to save our young people. That we can say, “I don’t exactly know what your life is about but I was young once too and I understand what you’re going through.” When I was diagnosed I was told I’d only live seven years, but now I’m going on 20+, and I’m only here because I listened to others.

NK: What would you say to President Obama about the kind of policy change you think is needed this Women & Girls HIV/AIDS Awareness Day?

DT: Abstinence has been pushed in our schools and it’s not working. We need comprehensive, age-appropriate sexuality education, such as the REAL Act. We also need to break down the stigma about people with HIV.

CK: Women and girls with HIV need support services along with medical care. Without support, we won’t be able to stay in care.

LJ: We want everyone educated about the disease in a way that is not judgmental or accusatory of any lifestyle over another. We want the information clearly stated, factual, and scientific so we can end this epidemic and so we don’t continue to lose women in the most productive years of their lives. HIV/AIDS is the number one killer of African American women ages 25 to 34 and that should be unacceptable. I don’t think we are too delicate as a country to talk about it — we talk about anything else.

VJ: The U.S. government must embrace prevention both for people living with HIV and for those who are vulnerable to contracting HIV. There’s not enough money to treat this disease away. It is very expensive to make us all undetectable. We have to prevent HIV in the first place.

NK: Anything else you’d like to share?

DT: Knowledge is power. If you have not been tested, take a test. If you have not talked to your kids about sex, talk to them honestly. Education starts at home.

CK: Women and girls have a powerful voice and with it we can make change.

LJ: Women should not be afraid to find out what their HIV status is. There are a lot of long term survivors, healthy, happy strong women who happen to have HIV or AIDS. It’s not a death sentence. There’s a lot of hope out there. We need to be able to move on and lead normal lives.

VJ: I would like to see every major national organization on women issue a statement to their constituency for Women & Girls HIV/AIDS Awareness Day in 2010.

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