PEORIA -- Here's a post by Clare Howard: [email protected]
Women increasingly are speaking out about their lives with HIV. Their voices come from despair, indignation and heartbreak. Their perspectives are from an unvarnished understanding of how society stigmatizes HIV-positive women and how that treatment serves only to fan the spread of this disease and put everyone, particularly young people, at greater risk.
By speaking out, these women expose themselves and their families to hatred and retaliation, but they offer their narratives to counter old stereotypes and prejudices. They know the real carrier of HIV/AIDS is not just a virus but ignorance and prejudice.
One local, HIV-positive woman is battling renal failure associated with her disease but is back in college earning a master’s degree in sociology. She wants to work with abused HIV-positive women, motivated in part by new research showing that a disproportionately high cause of death among HIV-positive women is intimate partner violence. Kat, who asked that her last name not be used, knows firsthand about abusive relationships.
"People think this is a man’s disease,” she said. “But if women don’t know their own value, they don’t think they are worthy of protection. More than 60 percent of HIV positive women have experienced violence.”
Kat, 42, had been in an abusive relationship in high school and escaped to college. She became more cautious and asked more questions before allowing another relationship to develop, but despite that, she contracted HIV from her college boyfriend. They had a monogamous, loving relationship. He did not know his status and died with tremendous guilt two years after Kat’s diagnosis.
“Friends couldn’t believe my boyfriend was heterosexual and didn’t use drugs,” she said. “People are no better educated today about HIV than they were 25 years ago. I know positive people who still live in households where their plates and glasses are separated. I know people who have been kicked out of their churches. I know a young man whose father preaches that he’s going to hell.”
She said, “People still place a moral judgment on HIV. I would like to get to the point we can say it is just a disease people get and figure out solutions. But ‘Abstinence Only Education’ stops the conversation. It keeps people in the dark and does not protect children.”
After her initial diagnosis as a 21-year-old college student, there was the meltdown stage. She dropped out of school, talked with her parents, enrolled in another college and graduated in equine sciences. Professionally, she wanted the advantage of working with some of the big names in her field, but she started her own business because she knew she’d be rejected by company health insurance and the reason for her rejection would end any career in agriculture.
“I was in the closet. The ag industry is not the most open minded,” Kat said.
Without health insurance, she qualified for Ryan White federal funds for her HIV medications, and she operated her own business raising and training horses in central Illinois until her HIV took even that work away from her.
Kat had wanted to hold off turning to medication when she was first diagnosed, but her mother, who works in pharmaceutics, strongly favored starting meds. Now Kat is resistant to most HIV medications and is in stage 4 kidney failure. Friends are being tested for compatibility to learn if they can donate a kidney.
It was Kat’s experience becoming resistant to one medication after another that helped lead to the breakthrough medical cocktails now used with great success.
“I know how women with HIV fare. Women in our society are more susceptible to poverty, and if you add the diagnosis of a life-threatening illness, it’s almost assured they will live in poverty. I was 21 when I was diagnosed, and knew I had no financial future,” she said, adding that a combination of student loans and scholarships is making graduate school possible.
The director of the Illinois Alliance for Sound AIDS Policy asked Kat if she’d give a speech at the state lobbying day in Springfield. Kat had never spoken publicly about her disease, but after 21 years of silence she immediately said yes.
On March 17, 2011, she spoke for almost five minutes in the rotunda in the State Capitol and was often interrupted by applause.
“Because of the stigma, I’ve been silent about my HIV status, but that ends today,” she said before an audience of dozens as state legislators walked by, pausing to listen. “I often think about all the young women who might not have been diagnosed with HIV if I had been willing or able to tell my story.”
She went on to talk about her own life and the link between low-self esteem, HIV and violence against woman. She hasn’t been silent since. Her goal then, now and in the future if she survives a kidney transplant is to help break the cycle of low self-worth, abuse and violence against HIV-positive women.
2. Deconstructing and Debunking the Stigma of HIV
We all grow up with role models and patterns of behavior. For some, that means parents who work regular jobs and maintain a fairly tranquil home life. But for girls who grow up in families where physical violence against mothers is the norm, violence and low self-esteem become the formative pattern of their lives.
Karen was one of those girls. She had watched her parents fight so violently they tore up the house. The rage would go on until it ended with love making. That’s what Karen expected in her life, and that’s what she got . . . only worse.
Now 52, Karen agreed to talk about her life because she’s spent decades analyzing her choices and thinking about how things could have been different. She’s establishing new models of behavior with her daughters and making sure they value themselves. She asked that her real name not be used because she has a job she loves, she can care for her children, she’s celibate, drug-free and respected by her community. She has become a good role model, but not without blood, trauma and HIV.
Karen was 11-years-old when she and her boyfriend got together, and it would be another 18 tumultuous years before his tyranny over her ended. He had her working the streets when she was 12. They took drugs together. She ended up in a coma from an overdose. Her boyfriend ruled with his fist. She was not permitted to speak unless spoken to. Her boyfriend once attempted suicide and tried to take Karen with him.
“I couldn’t even call the cops. I had no self-esteem. I was afraid for my children,” she said.
Karen was pregnant with their second child when her partner called her from jail and told her he was HIV positive. She got tested and learned she also was positive. She was 16 at the time.
The violence in their relationship raged for nearly two decades, and there were periods of homelessness. Karen’s grandmother, fearing her granddaughter would be killed at the hands of her boyfriend, took out insurance on Karen. But the relationship ended with a car accident. Her boyfriend was behind the wheel going 80 mph.
“I was broken from the waist down, had 375 staples, a bar in my leg, pins in my kneecap and no spleen,” she said. “They saved me, but he died. He was gone. I had to learn how to live. He had been my dad, my brother, my lover.”
For 17 years, she had gone without treatment for her HIV. She was afraid of the stigma and feared her family would reject her. She started drug treatment but was kicked out two weeks before graduation because she had feared telling them of her HIV status, but they found out.
“I cried and cried and begged for help. I was a mess. DCFS had taken my kids. They said I wouldn’t live long enough to take care of them. A case worker just out of college called me once at the shelter and asked if I was dead yet,” Karen said. “She told the families who had my kids to start adoption procedures because I was dying of AIDS. She told them I had given up all rights to my kids. That was a lie, but I didn’t know how to fight it. I was poor, sick and African American.”
She went for medical treatment for her HIV, and she found help for her spirit.
“I learned how to love myself,” she said with an incredulous smile. “I learned not to allow the virus to leave me all washed up and destroyed.”
Karen had been afraid to tell her daughters about her HIV, so she told them she had cancer. When she found the courage to tell them the truth, rather than rejecting her, they were proud of her strength.
Today, Karen is an advocate for comprehensive sex education and has carefully instructed her own five daughters. She has worked with public health programs distributing condoms to the public. She supports early intervention services and works in counseling.
Asked how to halt the progression of HIV/AIDS, Karen said, “The most important thing is to educate our kids and not be afraid to talk. I grew up in a generation when we couldn’t say the word ‘fart.’ But times have changed, and if we don’t change, we’ll lose the next generation of children.”
Karen knows the stigma of HIV only serves to entrench the status quo with its terrible cost in human suffering and death. The stigma distracts us from pursuing realistic, comprehensive solutions.
3.Weekly Events in Recognition of World AIDS Awareness Day
"Getting to Zero"
Peoria - Community organizations are partnering in week-long events for "Getting to Zero" to recognize December 1, 2012 as World AIDS Awareness Day. "Getting to Zero" events will be held throughout Peoria and focus on bringing the power and appreciation of the power of art to inspire social awareness.
After 3 decades of AIDS, 34 million people around the world now live with HIV. Randall McClallen, Health Protection Services Coordinator, Peoria City/County Health Department, states, "World AIDS Awareness Day is a great opportunity for everyone to learn more about AIDS and how people are living with this disease, not only around the world, but also right here in the Peoria area. Our prevention efforts at "Getting to Zero" to stop the spread of HIV include awareness events to better understand how lives are affected by the disease and by the stigma of living with HIV/AIDS."
Major event partners include Bradley University, Minority AIDS Awareness Council, Children's Home Association of Peoria, Central Illinois FRIENDS of PWA, Heart of Illinois HIV/AIDS Clinic, and Peoria City/County Health Department. Event listings include the following:
- November 19th. The Department of Theatre Arts is presenting the play IMAGINE that follows the stories of a small community of people whose lives have been affected by HIV/AIDS. The play will be held in the Neumiller Lecture Hall, Bradley Hall Building, at Bradley University, 7:30 p.m. Admission is free.
- November 20th. AZIZI Peer Educators are speaking on World AIDS Awareness Day events on the early morning news with Gary Moore of News 25.
- November 24th. Minority AIDS Awareness Council is sponsoring the Bowling for a Cure Kick-Off at Landmark Lanes, 3225 N. Dries Lane, Peoria, from 12:00-4:00 p.m. Activities include 3 games of bowling plus shoe rental for $10.00, a 50-50 drawing, a baked goods sale, and prizes for kids. Proceeds go towards local HIV prevention services and supplies.
- November 27th. Mayor Jim Ardis is offering a Proclamation for World AIDS Awareness Day at Peoria City Hall at 6 p.m.
- November 28th. The faith community throughout Peoria is invited to present HIV/AIDS awareness information during Wednesday night church services.
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- 6:00 p.m. Welcome address by Peoria City Councilman, Eric Turner.
- 6:05 p.m. Presentations on living with the stigma of being HIV positive - a global perspective.
- 6:20 p.m. Presentation and display of paintings by HIV/AIDS Activist, Jim Carey, originally from Peoria. Jim's presentation surrounds the need to alleviate the discrimination often associated with being HIV positive by modeling behavior to encourage people to be open and honest about HIV status.
- December 1st. Annual ACORN Breakfast. Tierra Claudin, AZIZI Peer Educators Assistant Program Coordinator, from the Minority AIDS Awareness Council, will give recognition to World AIDS Awareness Day. Red Ribbons will be on display.
For more information on World Aids Awareness Day events in the Peoria area, call Michael Maginn at Central Illinois FRIENDS of PWA at 309-671-2144.
For information on other important Public Health issues, visit the Peoria City/County Health Department website at www.pcchd.org.
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