Game Changer – The End of Stigma

From Dawn Patterson.

The best laid plans are plans at best. I’ve heard this quote many times. It’s held true so often in my life. This trip to Uganda was no different. I went there with a plan…many plans in fact. But one of my plans took a turn, a radical turn.

The HOPE+ sisterhood has always been about enabling HIV+ women to live longer, fuller lives through a Jesus centered relationship with a sister here in the US. But, because there is so much shame & stigma surrounding HIV, many of these women wanted….and needed….to remain private. Although Project HOPEFUL stands by the TRUTH “No shame in our game”….we needed to respect this. It’s so important for these women to understand that they have a disease….but they are NOT the disease! But, to help them….we need to understand them first.

I went to Uganda fully expecting each woman to want their “status” to remain private to everyone except to their sister.

I can joyfully tell you, that was not the case. AT ALL. Were there women who had not shared their status publicly? Yes. And we will respect that. But there are women who are joyfully sharing their stories and I would be doing them a disservice if I did not share them with you.

Take for instance Lazia. I met Lazia 2 years ago for the first time when I traveled to Uganda with my friend Cathy. She was one of our home visits. She was not strong, she was not physically well and had a relatively new relationship with Jesus. Lazia was a muslim and after her husband died from AIDS, she discovered she was HIV+. A few years later, a local pastor heard about this very sick woman and ministered to her. Through that relationship, she accepted Jesus. But because of her illness, she was very weak and wasn’t able to attend church often. It was around this time that we met her.

I met with Lazia several times on this trip and joy literally seeps out of this woman. She never stops smiling and continually praises Jesus. We had a standard format of questions that we would ask each woman and one of them was “have you shared your status with family and friends”. I wasn’t prepared for her response. With a huge smile on her face, she threw her hands up in the air and joyfully shouted “The whole town knows I have HIV! I have no shame.” You know that moment when your favorite team scores the winning touchdown and you jump in the air and shout “yes”. Well, that perfectly described how I felt AND how I reacted.

There is still so much stigma surrounding HIV. There is still much ignorance and fear. But for a small group of women, in a little town in Africa….there is no shame. They are proud. They are living positively. They are in love with Jesus. And I believe they will be the game changers.

The HOPE+ sisterhood Uganda is a 6 month commitment to be a “sister” to one of these precious women. You will encourage her, pray for her and financially assist her through a $40 per month donation. This donation will be used by your sister to start a small business so that she can obtain proper nutrition (which is absolutely essential for their ARV’s to work) and care for her children.

To learn more about this amazing ministry, please email me @ dawn@projecthopeful.org

As iron sharpens iron, so one person sharpens another – Proverbs 27:17

Adopting from Russia: The Davis Family Story

A Guest Post by Tesney Davis~

Two and a half years ago, my husband, Greg, and I began praying for God to do whatever he wanted with our lives. Adoption became something that he was showing us he wanted for our family. We began to pray about adopting a child with special needs. Greg and I have a lot of experience with children who have special needs. It seemed like a natural fit for our family. As we prayed, God opened our eyes to children with disabilities in orphanages across the ocean in Russia. We started our adoption journey of a child with Down Syndrome. We were given a referral for a child in Russia and awaited our invitation to go meet him.

Eight months later, as we neared the finish line of our adoption, one of the family members in Russia stepped forward to adopt the child for which we had been given a referral. We were devastated when we received the news that the child we had planned to bring into our family was no longer available for adoption. We grieved hard. Although heartbroken for our own loss, but God showed us that we were following him, and his ways are perfect. We knew we still wanted to adopt.

Shortly after losing our original referral, we received a new referral for a four-year-old boy with Down Syndrome named Kirill. We were more guarded with our emotions this time, but we had no doubts that we should commit to this child. We had to re-file a lot of our paperwork because of the change in referrals and regions of Russia, but our commitment to this child was not something we took lightly and we gladly did whatever it took to bring him into our family.

Then another piece of devastating news arrived from our adoption agency: a tragic story of an adoptive mother sending her child back to his country alone on a plane with a note pinned to his shirt had hit the media…and the child was from Russia. We were told this was not good and that our adoption could be delayed indefinitely. Adoptions in Russia came to a screeching halt. Kirill’s region stopped processing adoptions for eight long months. The judge refused to accept any Amercian adoption cases until an official treaty was signed between the United States and Russia.

Even though we wouldn’t be able to finalize the adoption in court until the treaty was signed, we were allowed to go visit Kirill and sign our official petition to adopt him in August 2010. We fell in love with him during our visits. This was our son.

During that time, we were told by our in-country facilitator that Kirill would be the first child from his region EVER to be adopted with Down Syndrome. A birth mother keeping her child with Down Syndrome is unheard of in this area of the world. Adoptions of children with Down Syndrome just don’t happen there, these children are literally hidden away from society in orphanages and mental institutions. As our process continued, it became apparent that Kirill would be a pioneer. If our adoption was approved, it would pave the way for other children with special needs to be adopted from this region.

Then, a miracle happened around Christmas and the judge in this region suddenly changed her mind and began processing American adoptions again. We were elated.  Could this be the light at the end of a very long tunnel? We were finally granted a court date-March 17, 2011. St. Patrick’s Day…a lucky day! Our son was coming home!

March 17^th arrived, and as we sat in the courtroom and suffered through five agonizing hours of difficult questioning, we were not prepared for anything but an approval of our case by the judge. Two doctors, two social workers, and the Minister of Children’s Services all made very strong statements on our behalf. They fought for us and for our son, Kirill.

But when the ruling was read, the judge said, “Your application to adopt is rejected.” The basis given was that Kirill was “not socially adaptable” due to his “medical condition” and he was better off in an institution than in a home with a family. As the judge read her ruling, she stated several times that we were a good family, that we met all the criteria to adopt a child, but that she would not approve our adoption because Kirill had Down Syndrome and his “level of backwardness” made him unfit for any family. She told us that we could adopt another child, because legally our application had no problems according to Russian adoption law. She said she would approve our adoption for a “typical” child, but not this child. Why? The only reason? Because he has Down Syndrome. Even though we were approved by our home study agency and by the USCIS to adopt a child with special needs. It made no sense whatsoever. Denying a child a family because he has Down Syndrome is a violation of human rights at its most basic level!

We appealed to the Russian Supreme Court in Moscow. Within two months, we received our Supreme Court date to appeal our regional judge’s decision. May 24, 2011, we stood before a panel of three Supreme Court judges and argued our case. We were told by our lawyer prior to our hearing to expect the worst. The best case scenario was that they would allow us another hearing with a different judge in our region, but that they would not overturn our original judge’s ruling. That meant we would have to wait for yet another court date.

But God is still a God of miracles. As the prosecutor in our hearing stood and read his opinion, that we should not be allowed to adopt Kirill, my heart sank. I just knew it was the end for our hopes of Kirill becoming a part of our family. Then a miracle happened: the head judge stood up and read his ruling. “the decision of the regional judge is OVERTURNED by the Supreme Court of Russia”. I didn’t hear much after that except that Kirill’s name was legally changed to “Gregory Kirill Davis”. I was too overwhelmed with emotions as I thanked God and started hugging everyone in the courtroom. We had been told to keep our composure because the Russian Supreme Court was very formal and serious; emotional outbursts would be perceived as weakness and we couldn’t show our feelings. That went out the window when the ruling was read and we celebrated in a flurry of tears and thanks to God for the miracle he had just performed.

We have been home almost 19 months with our son. I still get overwhelmed with emotions when I think about the miracle God performed. Kirill is thriving. He weighed only 19 pounds at five years old when we arrived home in June 2011. Now, he weighs 45 pounds and has grown 19 inches. He had severe problems with his sight and hearing; both have been corrected. He had numerous infections and gastrointestinal parasites. Those have all been treated and he’s healthy and happy. He goes to school, has friends, and we love him with all of our hearts. We cannot imagine our family without him. He brings us great joy and we are so proud to call him our son!

We love the people of Russia and it breaks our hearts to hear of the recent move to ban adoptions of Russian orphans by U.S. citizens. I am a member of several adoption groups and have a large network of fellow adoptive parents who have adopted children from Russia. Every single family I know LOVE and CHERISH their children from Russia.

Although there have been cases of abuse and neglect of children adopted from Russia, this is an exceptionally rare occurrence. These people are not the norm and they should be punished for their crimes.

To deny children the opportunity to have a loving family is a violation of human rights and a horrible crime against humanity. Thousands of children will face a lifetime in an institution instead of loving families if this law is passed. Please stand with us and contact your government officials to voice your opposition to the ban on Russian adoptions by Americans.

Join Project HOPEFUL’s staff in signing this petition to oppose the ban on Russian adoptions HERE. To read more on this story see this BBC News story

I slept with a girl…..and I didn’t catch HIV.

A guest post, by Jenny Clark

She is four years old. Her name is Leah Grace and she is the daughter of my friend Deb (the one I just went to Africa with). She contracted HIV through no fault of her own. She takes her meds every day like a good girl. Because of those meds, and the love of her family, she is a perfectly healthy normal little girl.

While in Uganda, I wiped her snot, drank after her, shared food with her, helped her in the bathroom….all of the things I would do with my own daughter. About halfway through the week we had some friends come and stay with us for a few nights, which caused us to have to do a little shuffle of the sleeping arrangements. I am no stranger to having kids in my bed and all up in my business while I sleep, so I didn’t think twice when Leah Grace wanted to bunk with me.

But then right before I fell asleep, 1987 came back to haunt me ……for a split second.

What if she has a stomach virus and throws up on me during the night?
Is HIV present in urine? What if she wets the bed?
She got a cut on her nose today…what if it opens up while she is asleep?
  

The truth is sometimes ugly, and I really don’t want to admit it…..especially since I am on staff with Project Hopeful, and our whole objective is to shine light on the facts about HIV and to advocate for children who live with it.

But then I realized, that if I KNOW the facts, and 1987 still crept in to my mind for a split second, how would my friends react in the same situation? How would I have reacted a couple of years ago?

Please friends, for the sake of this sweet girl and so many others like her, educate yourself!

Here are the fact about HIV…..most of them are very straightforward and the only thing you can do with them is read/understand them and help educate others……

….but 2 of these facts are things we can CHANGE…..YOU can change….right now…..today………….can you find them? Will you?

You NEVER have to fear contracting HIV through casual contact with an HIV+ person.

 

HIV has NEVER been transmitted in normal family living conditions. Never.

HIV FACTS

#1: HIV is spread in three main ways: Sexual contact, IV drug use (through the sharing of dirty needles), and mother to infant (through pregnancy, birth or breast feeding).

#2: Medications called ARV’s can mean the difference between life and death. Children who receive treatment are expected to live a normal lifespan.

#3: HIV is not found in sweat, urine, feces, tears, saliva or snot. It is found in blood, semen, vaginal fluids and breast milk. While HIV may live for a short while outside of the body, HIV transmission has not been reported as a result of contact with spillages or small traces of blood, semen or other bodily fluids. This is partially because HIV dies quite quickly once exposed to the air, and also because spilled fluids would have to get into a persons bloodstream to infect them.

#4: You don’t have to fear catching HIV through day to day activities with people who are HIV+. You are free to share plates, cups, utensils, food, toilets, towels, linens and other household items without risk of transmission. –American Academy of Family Physicians

#5: Today, HIV is considered a chronic, but manageable disease, much like Type II Diabetes (though Diabetes cannot be transmitted).

#6: If a pregnant mother does not receive medical treatment, there is approximately a 30% chance she will transmit the virus to her child. By treating mother and infant, doctors can reduce that rate to approximately 1%.

#7: A persons HIV+ status is protected medical information. There are US laws in place to protect the privacy of individuals living with the virus. There are also laws to protect citizens from being discriminated against because they have HIV/AIDS should they decide to disclose their HIV status.

#8: Social stigma is perhaps the greatest challenge an HIV+ individual will face.

#9:  A persons viral load is the amount of HIV found in their body. Through the use of HAART treatment it is possible for a patients viral load to become undetectable in laboratory tests. Having an undetectable viral load does not mean a person is cured. It simply means the medications are working to prevent the HIV virus from replicating within the body.

#10: In 2009 the Kaiser Family Foundation conducted a study titled “Survey of Americans about HIV/AIDS” which found that levels of knowledge about HIV/AIDS had not increased in the US since 1987.

#11: Families should use universal precautions whether or not someone in the family has HIV. Kids should be taught not to touch anyone’s blood anyway! This enables them to offer assistance to injured persons in a safe and healthy way.

#12: In the West, HIV is now considered a chronic illness rather than the terminal disease it used to be. Sadly, this isn’t the case for those children infected with HIV who are living in resource-poor settings, where 50% of infected and untreated children are not expected to live past the age of two.

#13: Today, 6,500 people will die as a result of AIDS. 6,000 of those people will leave children behind. Those children will join the already 15 million children who have lost parents to this treatable disease. (note: HIV is NOT AIDS. Patients receiving treatment for HIV (with ARV’s) can be expected to live long healthy lives without ever developing AIDS. In the U.S. ARV’s are readily available, however this is not the case in most developing parts of the world)

#14: There is no reason to fear that a mosquito or other insect could transmit HIV from one person to another through HIV-infected blood left on its mouth parts. Studies conducted by the CDC and elsewhere have shown no evidence of HIV transmission from mosquitoes or any other insects–even in areas where there are many cases of AIDS and large populations of mosquitoes. Lack of such outbreaks, despite intense efforts to detect them, supports the conclusion that HIV is not transmitted by insects.

#15: There are no documented cases of HIV being transmitted during participation in sports. The very low risk of transmission during sports participation would involve sports with direct body contact in which bleeding might be expected to occur. If someone is bleeding, their participation in the sport should be interrupted until the wound stops bleeding and is both antiseptically cleaned and securely bandaged. There is no risk of HIV transmission through sports activities where bleeding does not occur.

#16: No incident of food being contaminated with HIV-infected blood or semen has been reported to CDC. Furthermore, CDC has received no reports of HIV infection resulting from eating food, including condiments. HIV does not live long outside the body. Even if small amounts of HIV-infected blood or semen was consumed, exposure to the air, heat from cooking, and stomach acid would destroy the virus. Therefore, there is no risk of contracting HIV from eating food.

#17: Many scientific studies have been conducted to examine all the possible ways that HIV is transmitted. These studies have NOT shown HIV to be transmitted through air, water, insects, or casual contact.

THANK YOU, Cultivate Wines!

By Deb Steiner

A few months back, I emailed Project HOPEFUL Executive Director, Carolyn Twietmeyer, and asked whether I could sign up Project HOPEFUL in a contest run by Cultivate Wines.  We were familiar with the competition because, among other ways, we had advocated for other much-loved organizations in the same contest in previous quarters of voting.  Carolyn agreed that we could give it a try.  Our thought was that if we didn’t succeed in receiving a grant, at least we would have the opportunity to educate people about Project HOPEFUL and waiting children around the world.  Little did we know…..

Prior to the kick off of the Cultivate Wines voting, we strategized and brainstormed; prayed and strategized some more.  We didn’t really know what we were doing, but we were good at appearing as if we did!  We developed a staff schedule for posting about the vote, which promptly went out the window when voting began.  We circulated and re-circulated the rules, determined not to blow it, even inadvertently.

For two months – 61 days – we begged, cajoled, pleaded, and stomped for the vote.  We were relentless.  We were irritating.  We lost friends.  We gained supporters.  And, low and behold, we won.  Or better said, the children WON.  Project HOPEFUL was awarded the $50,000 grant.  Thank you, Jesus!  But that was only the beginning.

Throughout our conversations with Cultivate Wines, something became very obvious to us:  They get it.  They really, really get it.  Not only are they giving away 10% of their revenue to organizations like Project HOPEFUL, they aren’t even profitable yet.  Not only do they really care about issues affecting our world, they are doing something about it.  Not only have they been encouraging to us as a staff, but now we are working together to figure out how to be partners going forward.  Talk about counter-cultural!

Cultivate Wines is a wonderful business founded by people with fantastic hearts.  We are so grateful to them for the grant and for all of the grants they have given in the past and will in the future.  Would you consider supporting Cultivate Wines by purchasing your wine from them?  You can be sure that a percentage of your purchase will be paid forward to another worthy organization.  THANK YOU Cultivate Wines; we look forward to seeing where this crazy ride called life takes us next!

HIV/AIDS Adoption: Teen Selah Twietmeyer Gives Her HIV Adoption Testimony

In this powerful new interview, HIV/AIDS Infected teen Selah Twietmeyer, daughter of Kiel and Carolyn Twietmeyer tells how she was adopted from Ethiopia into her family and talks about disclosure.

“I am not ashamed and not afraid to tell the Truth”, says Selah. She also tells how stigma and misinformation about HIV/AIDS effected her while she was still in Ethiopia, before she knew she had a family who loved her. An incredible testimony!  Please share this message by reposting this link http://youtu.be/sRxDRzZxDbI .

Disclosure

Here is a very thoughtful post about how one family made a very personal choice about the issue of disclosure. Lyndsay Boulton is our State Associate for California and the mother of five children, one of whom is HIV+.  You can also find this post at the Boulton Family Blog.

DIS·CLOSE

    [dih-sklohz] verb, -closed, -clos·ing, noun

verb (used with object)

1.to make known; reveal or uncover: to disclose a secret.

2.to cause to appear; allow to be seen; lay open to view: Inspring the violets disclose their fragrant petals.

Disclosure is a very personal decision. We prayed and sought God, and other wise counsel before making our decision. We do not believe that disclosure is the right answer for every family.

Unfortunately there are people, specifically in the Church, that believe that disclosing HIV status is an act of selfishness, as if those who choose this path are trying to make themselves out to be martyrs. Would people say that about someone who disclosed Cancer, or Diabetes, or ADD or Autism? What special needs are OK to talk about, and which ones are unacceptable? And why? Why is HIV in a different category?

It is in a different category because of ignorance and shame.

This is very disheartening.  I believe it is our job, as the Church, to be the LIGHT to the world, to allow ourselves to be seen, to reveal or uncover darkness and discrimination. I can’t imagine Jesus telling me to cover up or lie about my child’s condition because of other peoples ignorance or cruelty. I don’t remember Jesus or the Apostles telling His followers to cover up or lie so that they wouldn’t have to deal with peoples cruelty or trials. In fact when I read the Bible I read just the opposite. (James 1:2)

Is this the easiest road to take? Definitely not! Am I putting my child at risk of being ridiculed or ostracized- probably. But all of my children are at risk of that because their lives look a lot different than the rest of the world! Being adopted can also set our daughter up for ridicule, and so can having a different color of skin, but I can’t protect her from that. Should we have decided not to adopt an African child because she might be ridiculed? Was she better off living in an orphanage without a family? I’m sure some people think so, but not us! Not the Church!

We, as the Bride of Christ have already failed the HIV/AIDS community. We shamed them into hiding, labeling their disease as a punishment for their ‘sin’. In our ignorance and fear we turned them into the ‘lepers’ of our generation. And guess what? If Jesus were here today who would He be hanging with? And so if my life is supposed to look like His, than do I really have another choice?
It is our job to be the ones to turn this around. To stand up for the HIV/AIDS community and say we love you! We love you with the love of Christ.

Because we have decided to be honest with our daughter and her condition, and have decided to educate others around us instead of hiding in shame I have had some amazing opportunities to spread TRUTH and LIGHT.

A few weeks ago I had a mother of one of my sons friends call me. Her son wanted to come over to our house and play. She knew about our adoption and knew that our daughter was HIV+. She wanted to know what that meant for her son, if he were to come over and play in our home. She was very gracious and was a little embarrassed about her lack of knowledge. I was SO thankful that she called. I was able to answer all of her questions and ease her fears. I was able to direct her to more information if she wanted to read further. I hung up the phone and just bawled and thanked God for that opportunity! Her son and mine have become great friends, and she is in love with our daughter! She appreciated how open and honest we were, allowing her to ask the questions.

Yesterday I received another phone call from a family member who lives in another state. One of his coworkers had found out earlier this week that her son is HIV+. He called me so that I could talk to her and answer her questions. She was devastated. She thought her son was going to die. I was able to share with her the facts. She was so grateful. I was able to encourage her, and now she can encourage her son.I would not have had either of these conversations if we had chosen a different route.

I am fully aware that there will be days where this might feel more like a burden than freedom, but that is when I will give it to God, because it is His to carry, not mine.As Christians, can’t we just support each other in the ways that we hear and respond to the call of God in our lives?

1 Corinthians 10:29-33
For why should my liberty be determined by someone else’s conscience? ³⁰If I partake with thankfulness, why am I denounced because of that for which I give thanks?
³¹So, whether you eat or drink, or whatever you do, do all to the glory of God.³² Give no offense to Jews or to Greeks or to the church of God, ³³just as I try to please everyone in everything I do, not seeking my own advantage, but that of many, that they may be saved.

If you have had the privilege of meeting my daughter you would know that she is a little world changer.

You can see it in her eyes.

She is something special.

She is such a gift to our family. 

Co-op Concerns

Today’s Stigma Story is written by L*. She is a home-schooling mother of 10 children ages 5-14. Stigma Stories is a short series running through the week of World AIDS Day (Dec 1st) to highlight the need for education about HIV/AIDS. The Truth Pandemic Campaign was created to help combat social stigma through ongoing educational initiatives.

This past fall our family started a new home-school co-op. A few days before it began, the board found out we had children who are HIV + and asked me to meet with them. I was a little nervous but went prepared to educate assuming that once they knew the truth about HIV they would be fine with it. Unfortunately I was wrong. Even after being educated they ended ups asking me to stay home from the first day of co-op stating they needed time to figure out how to deal with my children being there. When I told them I was not okay with that, they gave us the option of going but having me follow my youngest child with HIV around to all his classes even in the hallways. ( I guess they were more worried about my younger child infecting someone than my older one)

We ended up deciding not to go to co-op that first day. I just couldn’t bring myself to do something as unnecessary and ridiculous as follow my son around as if he were a threat to everyone when I knew that was so far from the truth. We stayed home and I hoped that by the next week they’d have worked through their issues and things would be okay. However, two days before we were supposed to go to co-op I got another call, this time it was to let me know that although they had already assigned me my helping jobs weeks earlier, they were now switching them so that I’d be in all of my son’s classes. Something they knew I would not be willing to do. I got the feeling they were trying to make us leave. The lady I spoke with was very angry, she accused me of being irresponsible, of not teaching my children to be peacemakers, of not being “Christian” because if I really cared about other people I should be willing to stay with my son in order to ensure everyone’s safety.

When we got off the phone I didn’t know if we’d end up going to that co-op or not. I was able to speak with Carolyn Twietmeyer, Executive Director of Project HOPEFUL, over the phone and she was such a huge help. She reminded me of my legal rights regarding discrimination and disclosure and gave me so much support. My husband and I decided that we would neither quit the co-op nor go along with their discrimination. I emailed the board to let them know I was going to go to co-op and do the jobs that had been previously assigned to me. I was a little worried not knowing what would happen we I got there, but I felt I needed to be a good example for my children who will likely have to deal with stigma their whole lives. The thought of them complying with others’ fear based demands made my heart so sad, I knew I could not do it either.

Fortunately, the day before going to co-op I was told over the phone that the board had decided to totally drop the issue. That they were going to go on as if they never knew my children were HIV positive. There was an edginess in the woman’s voice and it wasn’t a friendly call but I was relieved.

We are currently attending that co-op but every week is difficult. Although on the surface the issue was resolved, there is still a lot of tension there. Many of the women on the board won’t even look at me. We are leaving at the end of the semester

A Child Shall Lead Them

Today’s Stigma Story was submitted by A’s mother on her behalf. A* is an 8 year old girl who is in the 3rd grade. Stigma Stories is a short series running through the week of World AIDS Day (Dec 1st) to highlight the need for education about HIV/AIDS. The Truth Pandemic Campaign was created to help combat social stigma through ongoing educational initiatives.

One day I was playing with my friends at recess, and I tripped. My knee started bleeding really bad. My friends rushed over and tried to help me clean my leg.  I told them not to touch my blood or anybody’s blood.  Then I went to the nurse.  When I came back, everybody kept asking me, “Why were you acting so weird?  It was just a little blood, not a big deal.” I answered them, “It was a big deal. You’re never supposed to touch anyone’s blood because you don’t know what they have.” I could tell they weren’t really paying attention and didn’t think I was making sense.

I was frustrated because it’s like kids don’t know anything! I felt like I needed to talk to people about HIV and stuff–how you can get it and how you can’t.

“Guys,” I said, “Don’t freak out or tell everyone in the whole school this.  I have something to tell you.  I have HIV.”  They looked surprised.

“How did you get it?” they asked.

I said, “my mom had HIV and didn’t know, so I got it too.”

“What if you touch someone?”

“If I touch someone, you won’t get it. But you shouldn’t touch someone’s BLOOD, because HIV is in the blood.”

“What if you don’t know you have it? Could we have it?”

“No, you would know if you did something where you might get it.  You go to the doctor, and they can tell you if you have it.”

“How did your mom get it?”

“IDK,” I said. “It doesn’t matter how. Even if you have HIV, you can still be a normal person.”

Even though I told my friends I had HIV, everybody was acting the same.  Well, not everybody.  Mary* was acting funny with me.  When I went into the bathroom, she would leave.  When we had science lab, she would switch partners.  Outside, she would play with other friends, but not with me.  I knew it was about my HIV, but I couldn’t prove it.

One day my allergies were really bothering me, and my eyes were watering.  Mary came over and said, “Are you crying?”  Before I could explain it was my allergies, she said, “It’s okay.  I know what’s wrong.  You’re sad because I won’t play with you anymore, right?”

I said, “Why don’t want to be my friend?  Is it about the HIV?”

“My mom says if anybody has AIDS, they can give it to you, and you can die right away.  I don’t want to get it, so I want to be your friend, but just not the normal way.”

I could NOT believe it.  “Your mom is wrong!” I said.  “She doesn’t understand about HIV.  Do you really think someone is going to die if someone with HIV touches them?  Then why aren’t you dead?  I’ve touched you all school year.  Why isn’t the teacher dead?  Why isn’t the whole class dead?  It’s not that easy to get.  Ask your doctor if you don’t believe me.”

“My mom is smart,” she said.  “She wouldn’t lie about this.”

“Maybe she wouldn’t lie, but even smart people can make a mistake,” I said.  “What your mom said is not true.  Look, if you don’t want to touch me, then I don’t want to be friends.  I don’t need a friend who is scared to be around me.”

“I DO want to be friends!” she said.  “Is it okay if I only touch you a little though?  My mom said if I play with you, I have to be careful.”  I still thought it was silly, but I decided to be nice.  “Okay,” I said.  “We can still be friends.  Just stop acting so freaked out about it.”

“I promise I’ll try,” she said.  I don’t know if I trust her, but I will give her a chance.

Disclosure Dilemma: When You Want to Tell

Today’s Stigma Story is written by Kay and Lance of preciousandpositive.wordpress.com. Stigma Stories is a short series the week of World AIDS Day (Dec 1st) to highlight the need for education about HIV/AIDS. The Truth Pandemic Campaign was created to help combat social stigma through ongoing educational initiatives.

Lance and I have three precious children through adoption.  We are proud of that.  We cannot imagine loving them more than we do.  Two of them are of a different ethnicity and we love that about them.  We can’t imagine our family any other way.  We want the world to know what a blessing adoption is.  We hope God will use our example to further adoptions in our community.

Though, we have a secret we’re afraid to share.  At least that’s what it feels like.

Our three-year-old daughter has HIV.  Her disease poses no risk to our family, to our church, or to our community.  She takes medicine twice a day.  One day she can attend school, get a job, marry and have children.  For now she plays with dolls and likes to read in mommy’s lap.  But it feels like we are hiding something.

My husband and I have long since accepted her HIV.  We learned everything we could about the disease early on in the adoption process.  But we knew most people in our community still had old stereotypes and misconceptions about HIV/AIDS.  How would our community react if we told them we were adopting a child with HIV?  How would our friends and relatives treat us?  What would they think of our daughter?

We decided to keep her HIV status confidential because we wanted to protect her and our family from stigma and criticism and ostracism.  Honestly, we do not care what people think of us.  But we do care what they think of our daughter and how they might treat our family.  We have heard more than one story of families disclosing their child’s HIV and facing mistreatment – from extended family, friends, neighbors, and even from their church.

Would this happen to us?  We do not know and we are afraid to find out.  This is a struggle for us on many levels.  We don’t want our children growing up with a “family secret” they can’t tell.  We don’t want our daughter feeling ashamed of her HIV and afraid of people finding out.  We don’t want to go through life without the support of friends and Christian brothers and sisters.  We don’t want to be cowards or live in fear or fail to trust God.

When we told our parents about adopting a daughter with HIV, they expressed a desire that only immediate family know.  They were afraid how grandparents and aunts and uncles and friends in the community might respond.  When we contacted our local health department and the nearest pediatric infectious disease doctor for help completing adoption related paper-work, they refused.  One state health professional who works with the HIV population counseled us to keep our daughter’s HIV private for fear of being “run out of town”.

Complicating the issue is that my husband is the pastor of our small rural church.  Here are the people we should expect the most acceptance and support from.  But if we chose to disclose and it turned out that they did not accept our daughter’s HIV then the entire church could be affected, as well as my husband’s position as pastor. Now we find we are at the point where it is possible that our delay in disclosing could cause some to feel betrayed somehow by our long silence. Disclosure is a tough situation no matter which angle it is approached from.

The decision to keep our daughter’s HIV confidential has not been easy but that’s how unsafe we feel about disclosure.  We want to tell.  We want to be an advocate for our daughter and other children like her.  We want the world to know what a blessing it is to adopt a child with HIV.  But, at least for the time being, we are choosing to leave our daughter’s HIV out of it.

This is why we are so excited about Project HOPEFUL’s Truth Pandemic campaign.  We are a family who feels like we can’t speak up.  We need the help of others to spread the word and help eradicate the social stigma and ignorance surrounding HIV/AIDS.  We long for our daughter to grow up in a world where she feels accepted and free to disclose her HIV status with whoever she wants without rejection.

The Time for Education is NOW!

written by: Jennifer Sloniger

What to do for World AIDS Day?

The question had been posed to the Project HOPEFUL team and we were brainstorming. I took the morning to consider some options. Later that day, when I submitted a proposal for creating a World AIDS Day educational initiative I hardly knew what I was getting us into.

The idea for the Truth Pandemic Campaign couldn’t have come at a more hectic time for Project HOPEFUL as the People magazine article was about to release and the whole team was rushing to launch a new and improved website. (www.projecthopeful.org) Everyone was already firing on all cylinders; could we really accomplish everything required in less than two months?

As the pressure of trying to arrange all the details mounted I began to wonder if I hadn’t created more trouble for Project HOPEFUL than it was worth. I knew the concept was an answer to my prayers over what more could be done to help raise awareness about HIV/AIDS this year, but doubt was seeping in. Was this campaign a giant distraction during a crucial expansion for Project HOPEFUL? Was it too much to handle right now?

Then, my HIV+ son took a nasty fall.*cringe* He bit through his tongue and his lip (how he accomplished both at the same time still baffles us). And, there was blood. LOTS of it.

The blood spill wasn’t a big deal. We practice universal precautions in this home and know there has never been a case of transmission in a normal family living situation. ( Bleeding DOES happen in normal families.) However, knowing our son was in serious pain made dealing with his injury difficult for us. Needless to say, we took take a trip to our local children’s hospital emergency room that day.

We chose to drive to an emergency department at a hospital that boasts a quiet, fairly anonymous clinic (except for a page on the website people don’t know it exists in the hospital. Even the people at the front desk didn’t know how to direct us to the clinic upon our first visit there) where HIV+ pediatric patients receive loving comprehensive care from a dedicated team of specialists. This is the same pediatric HIV clinic where our son’s treatment is managed.

So, when we arrived for the first time at the hospital’s Emergency Department our family felt confident we’d receive excellent care. And we did. The staff in the ED treated our son with respect and efficiency. The main concern for our family was whether or not our son would be able to take his oral medications. When it was determined he’d have to stay overnight so he could be monitored the ED staff fondly sent us off to a room on the fourth floor with smiles, waves, and many well wishes.

It was when we got to our room that circumstances changed for my son. During his overnight in the hospital two nurses behaved toward him in a very unprofessional manner. I desire not to convey the details of our experience because I would never want to tarnish the reputation of the fine facility where we CHOOSE to take our children to receive care. These two nurses are not representative of the hospital as a whole. But, what I want to highlight is that after our experiences overnight in the hospital I felt confirmation that the Truth Pandemic WAS indeed very necessary. I was struck by experience that stigma exists even in the most surprising places and can creep up at a moment’s notice.

The statistic* which had first captured my attention – levels of knowledge about HIV/AIDS have not increased in the US since 1987 – was played out right before my very eyes by nurses stuck in a time warp. Any doubts I had about the timing of and need for the Truth Pandemic Campaign had vanished.

Deep sadness washed over me as I considered the little anonymous clinic; the place where parents quietly bring their children for state of the art treatment. The place where they strongly warn families to consider the risks of  disclosing their child’s HIV+ status so as to avoid facing stigma and discrimination at school, in their neighborhoods, or beyond. This little clinic of wonders with no sign, filled with the most wonderful staff no one knows about and tucked into an inconspicuous corner of an amazing facility. The same clinic that rallied to our side to deal with the wayward nurses and help retrain and educate the entire staff of the fourth floor.

Why should the clinic be forced to be so secretive, almost as if shrouded in shame? Why the need for such anonymity? Because clinics can’t deal with social stigma for families.

Families have to be willing to stand in the face of a lot of nastiness to disclose their status. After all, it’s their kids who suffer. It is the children with HIV who are demeaned, intimidated, insulted, and abused. No one can make the choice for them. They have to be willing to step out.

You and I can make it easier, though. We can make sure those families don’t stand alone by stepping out with them. We can help combat stigma through education as well. And in so doing we will lighten the load carried by people who are open about their HIV+ status.

I believe in the purpose of the Truth Pandemic Campaign more than ever now! I’ve witnessed the power to change people’s perceptions through education. The Truth Pandemic video offers kids (some HIV positive and others negative) themselves an opportunity to be a voice for their many peers who cannot be open about their HIV+ status.

Leading up to World AIDS Day the Project HOPEFUL Blog will be featuring a few stories of families and children who have been affected by stigma. Read for yourself why education is so important! Then, share the facts. Forward the Truth Pandemic video to at least 5 of your friends.

The kids THANK YOU!

*Kaiser Family Foundation
2009 Survey of Americans on HIV/AIDS:
Summary of Findings on the Domestic Epidemic